November 18, 2025 • 47 mins
Ian Stedman suffered 32 years with full body rashes, debilitating headaches, joint pain and hearing loss without a clear diagnosis. His Mother Barb had gone over 60 years with the same symptoms. After hundreds of doctors visits and decades of frustration - they had resigned to believe there were no answers. That is until Ian’s daughter, Lia was born covered in that all-too-recognizable rash. Ian re-ignited his search for answers in an effort to save his family.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Ruby.
Speaker 2 (00:06):
There was one day my eyes were so flared I
couldn't see. And I remember on that day wondering, where
is this going?
Speaker 3 (00:15):
What is this?
Speaker 2 (00:15):
Is this getting worse?
Speaker 1 (00:17):
It looks exactly like what we have. And I looked
at e in it and we just nodded. We knew,
we knew if she had it.
Speaker 4 (00:26):
It's not curable. It's a genetic change. And so that's
in your body all the time.
Speaker 2 (00:31):
One in three people untreated just don't wake up. Everyone
has their cross to bear. This is my this is
my burden. And now I've got a kid.
Speaker 3 (00:44):
How terrifying would it be to fight an unknown enemy
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half American suffer from some chronic illness,
and many struggle for an accurate diagnosis. These are their stories.
(01:10):
I'm Lauren Bright Pacheco and this is symptomatic.
Speaker 2 (01:19):
I am from a regular, old household family. I have
one older brother, two parents, born just outside of Toronto, Ontario.
Speaker 3 (01:30):
That's Ian Steadman. He is a lawyer, professor, and father
of three. Ian is a thoughtful measured speaker, extremely friendly
and quick with a joke.
Speaker 2 (01:41):
Grew up like a normal suburban kid in a growing community,
went to primary school in a French immersion, and was
raised around all boys playing sports at all times.
Speaker 3 (01:55):
I'm going to wager hockey was involved.
Speaker 2 (01:57):
Hockey yep, definitely, Baseball, five pin bowling was one of
the things that was big back then. My youth was
spent at school and sports.
Speaker 3 (02:08):
Really, so, for somebody who has not had the pleasure
of meeting Ian, how would you describe him?
Speaker 1 (02:19):
Very intellectual? He can be intense, but wickedly funny and
really dedicated to his family and to making a difference
in the world.
Speaker 3 (02:35):
That's Ian's mom, Barb. Barb suffered most of her life
from debilitating headaches, extreme joint pain, and unexplained rashes. When
Ian was born, it was clear to Barb that he
too was afflicted by whatever it was that was causing
her own symptoms. What is your earliest memory of thinking
(02:57):
he might have more in common with you in terms
of your health challenges. Do you remember seeing a symptom
and thinking this is familiar.
Speaker 1 (03:09):
When he was only a few months old, we had
a family cottage and we would go there and I'd
put him under the big shade tree, but he would
come in with red blotches all over his body, and
I thought, I can't put him out there. It must
be the sun. But then even if I had him inside,
he would still get the red blotches, so I knew
(03:31):
that was the same as I had got and he
was only a few months old.
Speaker 3 (03:37):
Your mother also navigated health challenges of her own. Tell
me your earliest childhood memories of realizing that your mother
was living with a health condition and how did that
manifest itself.
Speaker 2 (03:51):
My mother had all the same symptoms. Some of them
will flare and others will not. For her, she got
really bad migraine headaches, and that would be where Mum
was in the bedroom with the lights out, and you
just leave her alone for a day until she resurfaces.
Everything else, when her skin had blotches or her eyes
were red or arthritis, she powered through. My brother never
(04:15):
had the symptoms, obviously, my father never did. And I
ended up with the headaches.
Speaker 3 (04:20):
And when did the headache start?
Speaker 2 (04:22):
When I was in middle school, right grade six, seven eight,
things really started to have an impact on my day
to day where I would be at school and I'd
have to go off to the principal's office to find
a dark room because I had a headache.
Speaker 3 (04:36):
Barb hoped that Ian would be spared from the escalation
of symptoms she knew so well.
Speaker 1 (04:44):
I think you just worry. You worry about how bad
it won't get for him. My hives didn't really get
bad until I was in my twenties, and so his
didn't turn up all the time time, which may be
very relieved. But then as he got to be a teenager,
(05:04):
they turned up almost daily, and that really worried me.
Speaker 3 (05:10):
As Ian got older, he grew more self conscious about
hiding his skin covered in rashes that he did not
know how to explain.
Speaker 2 (05:20):
Kids show up to hockey they could change in the
dressing room. I didn't. I showed up to hockey covered
right long sleeved shirt, long underwear, never removed them. I
would be very careful not to have more skin exposed
than necessary so that I didn't have to have people
looking at me and noticing the difference. Got to a
point where I just wouldn't wear t shirts or shorts
(05:42):
anymore because I didn't want it. Presents as though you
have a disease of some sort or you're reacting to something.
Speaker 3 (05:48):
This rash, read well defined and raised from the skin
was not the only symptom growing more intense for Ian
as he went through puberty and started becoming a teenager.
Now you're going to doctors at the time, So were
you feeling any other symptoms in terms of pain or.
Speaker 2 (06:08):
Aches constantly bloodshot eyes that I couldn't get rid of
the skin rash. I actually now have twenty percent hearing
loss in one of my ears arthritis, so I would
have joint swelling. It wasn't debilitating most of the time.
It was like the ball of my big toe or
my heel or a wrist that got in the way
(06:28):
of sports. As I went into adolescence as well as
the body was growing, What kind.
Speaker 3 (06:34):
Of explanations are you getting in your early adolescence in
teenage years for what's going on?
Speaker 2 (06:40):
The explanation was always basically the scientific way of thing.
I don't know, So chronic idiopathic urticaria was the description
that I got of my skin, which is, I don't know,
arthritis is arthritis, So you just take an anti inflammatory
or a painkiller and that sent you on your way.
They had no idea how to treat that headaches that
they don't know what to do with those, And then
(07:00):
the eyes was the tough one because I would jump
around from optomologist optomologists trying to figure that out. I
was just taking visin over the counter of izing to
take the retiness out whenever I could, but no one
had any explanation.
Speaker 3 (07:12):
Really, every household has a doctor mom. How did your
mom help you treat those and how did she help
you navigate the emotional toll of something that she shared too.
Speaker 2 (07:26):
I think the biggest thing that she did was to
insulate me from the social If there was a day
where I wasn't feeling up for normal, everyday childhood things,
it wasn't made a big deal. It wasn't like I
was letting my family down for not being able to
go to this sport or this activity, or being able
to go to school today. She was always there to
(07:47):
backstop that and to never make me feel like I
like my decision to not do something was a problem,
To never make me feel like I was letting anyone
down by being sick.
Speaker 3 (08:00):
Did that bond you on some levels? And how did
that impact the way you mothered him?
Speaker 1 (08:09):
Yeah, there's a connection because we both had we understood
how the other failed. If Ian said he had a headache,
I knew he had a headache. I didn't have any
doubts about it. When Ian always needed a jacket to
match his outfit, he got it because I knew it
wasn't to match his outfit, it was to cover the hives.
(08:31):
You have an awareness of how you have to care
for him.
Speaker 3 (08:37):
With his mother's guidance, Ian made it through high school
and went off to college to study law, carrying with
him the tools he learned to manage his symptoms.
Speaker 2 (08:48):
When I went away to university in the year two thousand,
I had learned how to deal with it, and so
I stopped worrying about it. I did what my mom
had taught me to do. Right If there was a
tough day where it was just too much, I just
didn't go. I would stay home. I did almost no
extracurriculars when I was away at university. I don't think
(09:09):
it progressed per se, but I do think it became
my burden. My mom couldn't shelter me from it, or
protect me from it, or buffer me from it. It
had to be me figuring out how to manage that.
I'd have flares. I'd go to bed covered in hives.
Wake up, I'd go to exams with my hat low
and sunglasses on, my arms covered up in the middle
(09:31):
of summer. There was a whole bunch of ways in
which the normalcy of life was interrupted by a flare.
Speaker 3 (09:38):
How did you manage academically while dealing with all of that?
Speaker 2 (09:43):
I think the academics were actually an escape from real life.
I mean, I stayed in post secondary for fourteen years.
It's easier to do that than to show up at
work every day. It's easier to sit in front of
your desk and read something and write an essay than
to show up and to have to be physically present
(10:04):
when you don't know what you're dealing with on a
day to day basis.
Speaker 3 (10:09):
Are you still pushing though for a medical explanation at
this point?
Speaker 2 (10:13):
Great question. During my second or third year of university,
there were a couple of weeks where I thought, oh,
I'm in London. Now I'm not in Toronto, Let's go
see what the doctor's hearsay. I ended up with the
same answers from everyone.
Speaker 3 (10:25):
What would those answers have been? How were they offered,
and did you feel dismissed.
Speaker 2 (10:30):
It's not like they didn't meet me and run the
tests and try to figure it out. But nobody was
piecing together anything. It was looking at arthritis and saying, well,
this is how we treat arthritis. Take an ad bill.
It was looking at a headache and saying, we'll take
a tile on all. Here are some eyedrops. It was
the same thing. And because I didn't look like I
was dying, it wasn't important to figure it out. It
was here you go, get on. So I did give up.
(10:52):
At the point when I went to join the workforce,
I had totally given up on searching for answers. I
figured the answer is I just got to navigate this.
I've got to find a way to make it work.
Because everyone has their cross to bear. This is mine,
this is my burden.
Speaker 3 (11:12):
Doctor Ronald Laxer says this experience is common for patients
who can't be diagnosed quickly or with a common condition
that is instantly recognizable.
Speaker 4 (11:24):
Patients will see their family doctor, they're pediatrician. There then
be referred to skin doctors or eye doctors and they
go through their general differential or an approach to disorders
in those systems, and it doesn't fit the usual suspects,
and so they'll often say, well, you don't have all
(11:45):
the things I know about, so sorry, I think you'll
have to live with it. And I think that's what
happened with Ian quite a bit.
Speaker 3 (11:55):
Ian was told on multiple occasions that his symptoms were
not connected. Is that common that a doctor might not
see there is a link?
Speaker 4 (12:07):
Yeah, I think that's the case. Kind of like the
blind man and the elephant, and everybody sees a different
part and calls it a trunk or a tail or
a limb. So I have to find somebody maybe who
knows about these things or is working in that area,
rather than saying I did everything I can, I'm really sorry,
I can't figure this out. And also patients get incredibly
frustrated too, So it's very impactful on the quality of life.
(12:34):
But the hives by themselves or the eye inflammation by
itself isn't going to I don't want to be pejorative,
but it isn't going to kill you. So everybody gets
fed up and they kind of stop looking. This is
what it is. I'm going to have to get used.
Speaker 3 (12:49):
To this, and that is what Ian does. He moves forward,
carrying with him what he believes is his burden alone,
and goes on to fulfill his childhood dream of becoming
a lawyer working in private practice and then moving on
to the office of the Integrity Commissioner in the Legislative
(13:11):
Assembly of Ontario. Although he is succeeding in his career,
Ian symptoms continuously interrupt his ability to function. He is
often forced to ask coworkers to cover for him in
meetings because he can't even open his eyes from the
swelling or is self conscious about the redness. He's even
(13:31):
been forced to work out a system with his boss
in which he hides in her office and closes all
the blinds to ride out one of his horrific sneak
attack headaches. He feels that the disease has forced him
to the sidelines more than once in his career and
in his social life, including dating. Serendipitously, Ian reconnects with
(13:55):
an old friend from high school, Amy, and they fall
in love were.
Speaker 2 (14:00):
Married in two thousand and nine. The family didn't start
until twenty twelve. We were of that generation where we
spent a year or two trying to figure out how
to make a family, and then when it did happen,
our first little girl, now thirteen, was born in twenty twelve.
It's when she joined.
Speaker 3 (14:18):
Us, beautiful. What is her name?
Speaker 2 (14:23):
Her name is Leah.
Speaker 3 (14:24):
Yeah. What do you remember about the day Leah was born?
Speaker 2 (14:30):
I remember very vividly being at the hospital and when
Leah was born what should have been the most joyful
experience of just life when we saw her happy, crying, tears, excitement,
(14:52):
But I saw it. I knew what it was. Immediate
anxiety came in in a moment that should have been
all pure joy and excitement. I saw her skin. It
looked like what I had. She was born basically with
red blotches on her skin. But it's interesting, right because
(15:16):
when a baby is born and you turn to the
doctor and say what's wrong with her skin? They say,
babies are born with they have spots on their skin.
It'll go away. But that doctor doesn't know my story
and my mom's story, our history, doesn't know what I
see when I look in the mirror, doesn't know the
anxiety that I experience every day getting up trying to
figure out what do I got to do today to
(15:37):
navigate my symptoms. That's exact same thing that I think
when I look at her being handed to her mother
as she's born, is oh shit, is she going to
have to live the same life? Did me giving up
on looking for answers just doom this one to the
(15:57):
same existence.
Speaker 3 (16:01):
Ian is not alone in this fhere. Barb also recognizes
the familiar rash.
Speaker 1 (16:08):
Immediately, my first thought was, of course, it's exactly what
Ian and I have. She had the rash. I just
looked at Ian and we just nodded. We knew, we
knew she had it.
Speaker 2 (16:20):
This wasn't just my burden. Something was going on here.
Speaker 3 (16:26):
Ian takes paternity leave to spend more time with Leah
while she grows. Though her first months are full of joy,
love and excitement, this lingering fear of what is to
come for her is ever present in Ian's mind.
Speaker 2 (16:44):
It was in the three months that I took pat leeve,
you know, everything was the same. We had the kid
with the spots.
Speaker 1 (16:49):
That was it.
Speaker 2 (16:50):
It was just the spots. She starts walking, I want
to say, like eleven or nine and a half, ten months,
like it was right in there really early, probably because
she had so many people helping her first born, the
whole family's around right. There was a period just before
one year where she reverted to crawling.
Speaker 1 (17:11):
She stopped walking because as far as Ian could tell,
her hip hurt, she had joint pain.
Speaker 2 (17:18):
As she couldn't walk, something was happening. And that was
before she was verbal. She can't explain what she's experiencing
or going on. And she wasn't crying, but she just
wasn't walking anymore. That was the day the deep feeling
of failure set in, but turned into a motivation, which
was it's not good enough for me to not have
(17:40):
answers anymore.
Speaker 1 (17:43):
More than the hide that motivated him at that point.
It was like nothing stopping me until I figure this out.
He was that good have his oatter go through the
same thing.
Speaker 3 (17:54):
I can't imagine that mix of emotion and ultimately guilt
and not wanting your daughter to suffer those bouts of
shame and insecurity and pain that you had to endure.
Speaker 2 (18:15):
I think you hit the nail on the head with guilt.
It's a feeling like immediately you failed as a parent.
The second feeling you have is I failed them. They
don't know it yet, but I failed them because I
didn't figure this out first. Wow, and that doesn't leave
you like that. Still to this day, that's one of
(18:40):
the motivating animating feelings in my life is a perpetual
fear of continuing to fail your child. At this point,
I've got a master's in philosophy, which is a research
master's a law degree. It wasn't until I had ten
(19:02):
years of post secondary research skills where I had the
gumption to think that I could contribute to the pursuit
of finding an answer. My wife worked at the University
of Toronto at the time, and so we had access
to the library, and so I spent every evening reading
medical journals about hives and rashs.
Speaker 1 (19:25):
He was so determined to figure out what it was.
There were times when we come over and he would
be on the strangest diet because he wanted to know
for it was food, and I thought, who could eat
crawl eggs? Who was doing anything? He read to find
out what was wrong?
Speaker 3 (19:43):
So you become a medical detective.
Speaker 2 (19:45):
I tried. I couldn't read a medical journal for the
life of me. The words that we use in science
are much too large for Ian Stedman. So I was
reading dermatology papers, looking at pictures. Nothing you know where
I ended up ended up on Google Search. I searched
skin rash, and then I scrolled Google Images. This is
(20:05):
pre AIDA's right, So you can't just take a picture
of my own skin, throw it on chatchypt and say
find this.
Speaker 3 (20:10):
No.
Speaker 2 (20:11):
Ian had to scroll, So I scrolled and scrolled and
scrolled and scrolled. The kid goes to bed at eight o'clock.
Wife goes to bed at ten o'clock. I set up
until two o'clock, just scrolling and scrolling and scrolling. I
found one picture and Google Images that looked like me.
Speaker 3 (20:32):
We'll be right back with Symptomatic, a medical mystery podcast.
Now back to Symptomatic, a medical mystery podcast. After months
of scrolling and multiple generations of lived symptoms in his family,
Ian finds a single paragraph in a sea of millions
(20:56):
that stops him in his tracks. Take me to that
exact moment.
Speaker 2 (21:01):
Uh, you know it, it's you know exactly what it is.
I know my rash. I know what this is. I
saw it, I clicked it, and then it took me
to a man's blog who is German? So it was
written in German, so you quickly learned German. Yeah, I
have an image, but I have a trail, right, and
so I could start figuring it out. And so what
(21:23):
I could read on the page that was English enough
for me to figure out was three words muckle Wells syndrome.
Speaker 3 (21:32):
In rome. Muckle Wells syndrome, a condition that at the
time was so rare that it was only cited to
affect one in one million people.
Speaker 2 (21:45):
That was my next clue. That's the bread crumb. And
so I started googling muckle Wells and I find out
there's a couple of different symptoms of muckle Wells. Right,
there's these red eyes, these chronic red eyes. There's these
the skin hives. Obviously it's an inflammatory disease, so the arthritis.
There's headaches. Okay, Now I can go back to those
medical journals and what's in there about muchle Wells, and
(22:08):
I find a paper that pieces together my medical history.
Speaker 1 (22:13):
I kind of hoped that he found something, because if
you have a name for something and you know what
it is, it's easier to handle it, no matter how
devastating it is. It's easier because you know what you're
dealing with. Israel as he described them to me, and
(22:35):
I'm going, yeah, yep, that too. All of this is together.
I couldn't believe it. All kinds of things that I
didn't realize. We're all together, and so wes he said it.
It suddenly made sense.
Speaker 3 (22:47):
It clicked. The more Ian learned about the prognosis of
untreated muchael Wells, the more he understood how significant his
discovery was.
Speaker 2 (22:58):
But one of the things I learned was if you're
not treated, the protein that causes the inflammation actually causes
emiloidosis in one third of Mucklewell's patients by the age
of thirty six, and emiloidosis is kidney failure. It's just
not waking up because the protein has shut down a
(23:21):
vital organ. So one in three people untreated with Mucklewlls
just don't wake up. My mom's over thirty six, so
she seems to have bucked the trend. I'm running up
against it, and now I've got a kid, so there's
three of us. I may have avoided death because my
daughter was born sick. If it wasn't for Leah being sick,
(23:42):
I may be the one in three.
Speaker 3 (23:47):
How do you explain or define Mucklewell's syndrome.
Speaker 4 (23:52):
Muckelwell syndrome is part of a group of disorders which
are genetic in origin, and they're associated with a mutation
and a specific gene. That gene is helpful in helping
us interact with our environment, and it protects us from
infections and from foreign chemicals. When that gene activates, it
(24:14):
brings several molecules together which allow our defense systems to
fight off invading organisms or chemicals which are about to
disturb the body. Now, changes in that gene may lead
to spontaneous activation of those proteins, and they may kick
off an inflammatory cascade that leads to all the signs
(24:35):
and symptoms of fighting off an infection. But there's nothing there.
Speaker 3 (24:40):
Ready with a name. Finally, Ian must figure out his
next steps. So, armed with that information, how do you
go about getting a proper diagnosis?
Speaker 2 (24:51):
Now I'm a researcher. Now I'm a lawyer. As a lawyer,
your job isn't to know the law. It's to know
how to find the answers to legal questions. How to
identify the question and then find the answer. So I
know what the question is? Now, what is Muckael Wells?
So I've found some answers in the medical journals. What's
the next question? Who in Canada knows about muckle Wells.
(25:11):
So I'm googling doctor Canada auto inflammatory and what I
find is two doctors, one at Sick Kids and one
formerly at Sick Kids now in Calgary.
Speaker 3 (25:22):
Enter doctor Ronald Laxer from earlier. Doctor Laxer is one
of the foremost rheumatologists in Canada. Rheumatologists specialize in conditions
affecting the joints, muscles, bones, and connective tissue. Doctor Laxer
is internationally recognized in the field of auto inflammatory disease
(25:42):
and was an inaugural division head at Sick Kids. This
is the moment in Ian's story where their paths cross
and life changes for his family forever.
Speaker 4 (25:55):
I just happened to be in the right place at
the right time for him, and I have been doing
this clinic. It's called auto inflammatory Clinic, and I'm very
interested in these diseases and making the diagnoses and getting
drugs to patience.
Speaker 2 (26:10):
I kind of cold email this talk to her in
the middle of nowhere, and you can imagine like this
is a blur because from the day that I found
the picture to the email to the doctor, like it's
within seventy two hours. I'm just spinning, but I send
him this email. His name is doctor Ron lax Or.
He's a very senior, very respected roeumatologist at Sick Kids.
(26:33):
With this description, with the pictures, with my daughter's story.
I wake up the next day at eight am. I
have a response in my inbox. This is the first
time I've ever spoken to a medical professional and felt
like they listened and understood something and believed me. Was
him replying and saying, I think you're onto something.
Speaker 3 (26:56):
What Ian did not know at the time was that
doctor Laxer received this email while getting ready to present
to a room full of leading rheumatologists.
Speaker 4 (27:10):
I was at a conference in Denmark and I was
presenting a whole bunch of different cases, challenging cases to
the audience and just to see what they think it is,
what kind of tests they would do. And one of
them that I had on my list to present was
Michael Wells. So I talked about the case that I
received a couple of hours before the talk.
Speaker 3 (27:31):
So you were basically unofficially diagnosed by a convention of rheumatologists.
Speaker 2 (27:37):
It's amazing, right.
Speaker 3 (27:40):
What did doctor Laxer say next?
Speaker 2 (27:42):
Get yourself a referral to Sick kids under Leah's name,
come with her.
Speaker 3 (27:47):
I need to see you, okay, so you bring Leah
to see him.
Speaker 2 (27:51):
I actually had to go back to an adult doctor
who I'd seen before, and I told him, I want
to referral to sick kids to see doctor Ron Laxer
for this disease, Michael Wells. And this adult rheumatologist said,
that's not it. I'm not giving you that referral people
with muckle Wells. It's a very severe disease. I don't
see people with that. That's not what you have. So
I had to show him the email from doctor Laxer
(28:14):
saying get in, and then he read the email and
then apparently he had studied under doctor Laxer, and so
when he saw the name on the email, he stopped
second guessing me.
Speaker 4 (28:25):
I'm a pediatrician, so it means in my hospital, I
really can only see patients up to the age of eighteen,
and I have to get permission to see adults. So
I had to do that, and I was pretty confident
based on what Ian had written. And we're a research
hospital and a teaching hospital at the hospital for six children,
and so there are always trainees around and it's very
(28:48):
important for them to see things like this, so if
they see it once, they won't forget it.
Speaker 2 (28:54):
I'm at the Sick Kid's Hospital. I'm thirty two years old.
I'm sitting on a bed in an exam room in
my underwear because he's looking at me. And then all
of a sudden, there's a parade of rheumatologists come in
to Pope kin prod and point and ask questions.
Speaker 4 (29:09):
And I asked aame's permission if I could bring a
group in, and we had about six to ten people
come in. Maybe maybe it was a little bit of
a turnstile sort of thing. Ian was great. He kept
telling the story. Is so important to hear the story.
It was a very memorable day for many of us.
Speaker 2 (29:27):
No one's ever cared before. Right for me in that moment,
I don't care if there's thirty forty to fifty of them.
They're asking me questions. I wasn't just this chronic idiopathic sedment.
Not anymore. Now there's a bunch of people who are
very smart, caring to find out more and ask questions.
Speaker 3 (29:50):
Why do you think it's so important to hear these
patient stories.
Speaker 4 (29:54):
I think they're much more impactful than your sterilized history
where you go through through by wrote a series of questions.
When you hear about the impact that it's having, it,
I think it's much more compelling in terms of making
you want to solve the problem and helping the patients
and families. You hear about the significant impact on their
(30:16):
lives and their education and how they grew up and
how they may have been treated, how they look at
the world, And that's not what you get in your
standard history and physical I think storytelling has become a
much more important part of medicine, much more prominent role
in education, getting people to tell their stories.
Speaker 3 (30:40):
So for thirty two years, you lived your life afraid
of being seen because of the physical manifestations, and this
is the first time you truly feel seen by the
medical community.
Speaker 2 (30:53):
Isn't that something? But I'm also sitting there with my
daughter right I'm at the point now where knowledge is power.
I want an answer, even if the answer is here's
the name of it, but we don't know what to
do with it. Because if I don't have information, I
can't figure out my next step. And I explain to him,
(31:15):
how you know, I haven't worn shorts and t shirts
and years, and one of the most vivid memories I
have in my life bar none, is him turning to
me while I'm sitting there in my underwear and saying,
we'll have you in shorts by summer. And I'll never forget.
I'll never forget him saying that to me, because as
(31:35):
a doctor with a rare disease patient in front of you,
you don't make promises. He's not saying I know what's
wrong with you. He's saying, I have a solution.
Speaker 1 (31:46):
Holy shit.
Speaker 2 (31:48):
The floor drops out right. I'm emotional thinking about the moment.
I can't relive it without reliving it fully. It just
runs through me those things.
Speaker 3 (32:02):
When you got your daughter's diagnosis, you knew that you
had gotten it from the right person and she was
in the best hands possible. Tell me about calling your
mom once you had an official diagnosis.
Speaker 2 (32:16):
I had said, we need to get you in to
get tested as well. So we all have we all
have this record of getting our panels back and the
confirmed Michael Wells diagnosis. Leah first, me, second month, third.
Speaker 1 (32:32):
And so I went in and I already knew that
if that's what I had had and what Leah had
and that's what I had, but they had to confirm
it and it was a relief. It was a relief
to say, Okay, this is what it is. But it
was also for me a little bit of a guilt
trip because I felt this is what.
Speaker 3 (32:51):
I gave them. Once all three generations have received their diagnosis,
they turned to doctor Laxer for treatment. Is it curable
and how is it treated? What's the most effective treatment.
Speaker 4 (33:07):
It's not curable. It's a genetic change and so that's
in your body all the time. But it is very
treatable with drugs that block the proteins that result from
this gene mutation. So it makes these inflammation proteins, and
there are drugs now available which counteract those proteins and
(33:29):
they're extremely effective.
Speaker 3 (33:32):
So what does treatment look like as far as the delivery.
Speaker 2 (33:36):
There's an injectable drug that plugs the protein, so just
stops the body from producing the protein entirely. And the
challenge here now is that it's sixteen thousand dollars every injection,
and there is eight weeks between each injection, so sixteen
thousand dollars every eight weeks for this needle that effectively
takes away my one in three chances of death by thirty.
Speaker 3 (33:58):
Six teen thousand dollars.
Speaker 2 (34:01):
Yeah, and that's a miracle biologic drug for sure.
Speaker 3 (34:05):
Yeah, for you, for your daughter, and for your mother.
Speaker 2 (34:10):
Yes, and that that's the next step in our journey
is how do we get access to this drug?
Speaker 3 (34:15):
At this time, Ian is blessed with a job that
provides his family with the level of health care support
necessary to treat them.
Speaker 2 (34:22):
If I want to change my job, I no longer
have access to the life saving medicine that I need
and my daughter needs. So one of the first things
that we did as a young couple was to sell
the first home we ever owned together and to move
back in with her parents.
Speaker 3 (34:39):
How did you handle that?
Speaker 2 (34:41):
The first thing that I said to her after we
figured out that we had access to this drug was
We'll never be without it. Our daughter can never be
without this medicine. That's always going to be there in
case we need it. And that was not a small decision.
It's a step back in the kind of community society
that I was raised in.
Speaker 3 (35:01):
So now you have a safety net in case of emergency,
but you will need this life sustaining treatment for the
rest of your lives. What are the next steps to
ensure that you all have that access.
Speaker 2 (35:15):
Under doctor Laxer's mentorship, I ended up getting more involved
in learning about health care policy and law. He started
introducing me to people there's a Canadian organization for rare disorders,
and then I ended up getting involved in going to
conferences and learning a little bit more about health policy
in the rare disease space. So that's what we did
(35:36):
with doctor at Laxer's help. We petitioned my wife's employer's
formulary to add the drug. It took eight months and
then they said we've added it to the formulary.
Speaker 3 (35:48):
Formularies are lists of approved medication that are covered. Because
Canada does not have a universal national formulary, these lists
can vary between provinces, territories, and third party insurance providers.
Speaker 2 (36:02):
So now we get to submit for reimbursement. And so
the first time we submitted under her plan, they denied us.
And they denied us because the science was so unsettled
in this space that they said we needed to try
steroids first, So we needed to pump our daughter full
of steroids before they would give her this life saving medicine.
(36:25):
And so doctor laxer, like I said before, just salt
of the earth. Incredible human he just like Hulk. What
they want me to shove? Steroids and a two year
old girl? When the standard of care is published, he
wrote them. He got their decision reversed and we started
to see formularies. Now my mum's formularity had it. And
(36:47):
then slowly over time, every major formulary in Canada has
added this drug.
Speaker 3 (36:54):
That's amazing and you were part of that domino effect
part of it. So tell me the impact that this
miracle drug had on all three of your lives and
how long did it take to see the impact.
Speaker 2 (37:10):
So we took the medicine. We woke up the next
day and it was a light switch. It was all
gone the next day.
Speaker 1 (37:17):
The day I got my first needle was a last
day I had pain. Last day I had a headache,
last day I had hives.
Speaker 3 (37:24):
What was that like?
Speaker 1 (37:26):
That was like the promise of a real retirement, that
retirement where I'm not using a cane. I'm seventy six,
I don't have to use a cane or anything. I
run a walking group. I can be as active as
I want because I don't have a headache and my
eyes are too sorry to go outside. It's like a
(37:47):
life given to me that's not full of limitation.
Speaker 3 (37:52):
And for Leah, how has the treatment affected her life?
Speaker 2 (37:56):
So we're very fortunate that, I would say by the
time we hadn't met, she had just started to become
self aware of the spots. But then the medicine was
a week later and it was gone overnight. So she
never really lived a life where she was self conscious
of any of it. And that's good and bad. It's
something that my wife and I talk about quite a bit.
(38:18):
It's our job to help her experience her baseline of
not being sick right, but at the same time, it's
part of her identity that we have to inform her about.
She's going to have to navigate her adult life of
access to this medicine. She can't just have any job
and any employer and any life she wants. Her life
(38:40):
does have to in some sense revolve around how to
maintain access to a therapeutic that keeps her alive. That's
not a small burden to put on a kid.
Speaker 3 (38:49):
Of course, despite that burden, this treatment works and has
had a profound effect. What have you seen Leah do
in her life? Life that you perhaps struggle to do
in yours.
Speaker 2 (39:04):
She's an athlete, she's her body does what she wants
it to do. She's not limited by it. She's the
youngest kid to ever take this medicine. So technically we
don't really know the long term effects of turning off
this part of your immune system. It's an immunosuppressant. This
(39:24):
protein is part of your immune system when it's properly functioning,
so we don't know the long term effects. She's been
very lucky. There's not much that Leah says I want
to do that she can't do.
Speaker 3 (39:37):
Passionate to help others outside of his family. Ian is
a steering committee member for the Canadian Rare Disease Network,
is the chair of the board for the Canadian Auto
Inflammatory Network, and is a fellow in AI law and
ethics at the Hospital for Sick Children. He has become
a formidable advocate for those like him who are living
(39:59):
with rare diseases.
Speaker 2 (40:00):
When I realized how much information about me was trapped
in my doctor's handwritten notes, Mike doctor when we were diagnosed,
thought that we were number eleven, twelve and thirteen in Canada.
With Michael Wells disease, And I asked him, how do
you know that? He says, well, because I've talked to
other doctors, and that's my guest. It's a ballpark. But
if he wanted to know how the doctor in Nova
Scotia treated their patient with Michael Wells, he'd have to
(40:24):
get the doctor and the patient's permission, And you'd have
to know that they exist first of all, to share
that data, to share their story, to share their medical records.
It's just locked away in cabinets. And I think that's
the power of telling our stories and talking and being
open and engaging with patients and engaging with communities, is
that we're starting to realize that there's so much more
(40:46):
underneath the surface that we didn't see before. Let's just
shine a light on it. Now.
Speaker 3 (40:52):
Are you surprised in any way, shape or form that
Ian's work has now morphed into helping others in the
rare condition space.
Speaker 1 (41:03):
No, I'm not surprised at all. Ian has has always
been a really caring person. To see him now know
that he doesn't have limitations. He doesn't have a day
when he doesn't want to be on camera because verd
eye or hive is wonderful because I've always seen Ian
as a child with enormous potential as a human being
(41:25):
to do whatever he wants. When he found his answer,
just kept going and saying, I'm taking this to everybody.
This isn't surprising at all.
Speaker 3 (41:33):
When you look back at your own life, do you
ever feel a sense of grief for what you may
have lost in those years that you went untreated for
muckle Wells?
Speaker 5 (41:45):
No.
Speaker 1 (41:46):
I think who we are and what happens to us,
this one who makes us who we are. I learned
learned how to deal with pain. I learned how to
be more compassionate to others because my pain wasn't it's
all And I think it's all about moving forward. And
that's what he did. He moved forward and found a
(42:06):
cure for all of us. Though, No, I have no regrets.
Speaker 3 (42:12):
When you look back on your mom's experience with this condition,
the years she's spent struggling, but also the incredible feat
of moving forward despite the tremendous pain and the challenges,
how do you feel.
Speaker 2 (42:29):
There was a point where I thought of my mother's
efforts as not being enough, And it isn't until I've
had time to reflect and to find, for lack of
a better word, grace for what the experience must have
been for her. That I've come to realize the power
(42:52):
of her effort. Whatever the diagnosis has given her, I'm
grateful for, But I'm even more grateful now for what
she was able to give to me despite not having
that diagnosis.
Speaker 3 (43:08):
But I also I.
Speaker 2 (43:09):
Feel relief in the idea that maybe I was able
to pay your jeez, to give her something in return
for that which must have been an impossible effort on
her part in the sacrifices she made to make sure
that I wasn't making sacrifices.
Speaker 3 (43:32):
What do you hope that people take away from Ian's
story and in connection to it, Leah and barb story.
Speaker 4 (43:41):
The power of the patient to not give up, to
continue to advocate if you're convinced about something, don't take
no for an answer. When you listen to stories, it's
not just as adopters. You're listening to some story as
a fellow human being. And we have the same feelings,
(44:05):
We have families, we have children, we empathize completely. I
think that's one of the very important messages of this story.
Speaker 3 (44:13):
A story and a diagnosis that changed three generations of
a family showing up in profound and profoundly simple ways.
Speaker 2 (44:24):
After having the medicine, we went grocery shopping. The family
went it. It was spring, it was almost summer. We
went grocery shopping. It was too cold. But I got
home and I realized that I just went grocery shopping
and shorts and a T shirt. I realized that after
I got home, I hadn't thought about it. And as
it sank in, as it settled in, I sent an
email to doctor Laxer and the woman who was assisting him,
(44:46):
the nurse at the time, and I sent them an
email and I said, I just wanted you to know
that I just went grocery shopping and shorts and a
T shirt. And it's such a nothing burger, but it
so much And to this day, like that's one of
the emails that stands out for him too. How how
(45:07):
it all came full circle. I'll have you in shorts
and then it just happened, And it just happened. I
was comfortable enough to do it without even thinking about it.
Speaker 3 (45:19):
You can learn more about the Canadian auto inflammatory network
at www. Dot auto inflammatory dot CA, Sick KIDCA can
be found online at www dot sick KIDSCA.
Speaker 2 (45:34):
My name is Ian Stedman. I live with a rare
disease called Michael Well syndrome, and I spent thirty two
years looking for a diagnosis before finally landing on one
after my first daughter was born with the same disease.
Speaker 3 (45:53):
Coming up on next week's episode of Symptomatic. For as
long as Sienna Dtree can remember, she's had random bouts
of heavy legs, headaches, and loss of vision. As she
got older, that heavy sensation grew into episodes in which
she could not move altogether.
Speaker 5 (46:12):
I was shaking the director's hand, getting these flowers the
whole nine yards, and my smile it became hard to smile,
and I realized all of my arms and legs were
like starting to feel like really heavy. Everybody else left
the stage, and I couldn't get up to leave the stage.
The band director caught me out side of his eye,
and he came back, and my parents came up from
(46:33):
the audience while Sienna is still on the stage. My
parents took me to the er because they were just like,
this is not normal, even for you.
Speaker 3 (46:44):
Years would pass before Sienna would get a seemingly out
of the blue phone call from her doctor that changed everything.
As always, we would love to hear from you. Send
us your thoughts on this episode, or share a medical
mystery of your own at Symptomatic at iHeartMedia dot com
and please rate and review Symptomatic wherever you get your podcasts.
(47:08):
We'll see you next time, and until then, be well. Symptomatic,
a medical mystery podcast, is a production of iHeartMedia's Ruby Studio.
Our show is hosted by me Lauren Bright Pacheco. Our
executive producers are James Foster, Matt Ramano, and myself. Our
(47:28):
supervising producers are Ryan Ovadia, Haley Aliah Ericsson, and Daniel Ainsworth.
This episode was written by Haley Aliah Ericsson and edited
by Daniel Ainsworth.
Ruby.
Speaker 2 (00:06):
There was one day my eyes were so flared I
couldn't see. And I remember on that day wondering, where
is this going?
Speaker 3 (00:15):
What is this?
Speaker 2 (00:15):
Is this getting worse?
Speaker 1 (00:17):
It looks exactly like what we have. And I looked
at e in it and we just nodded. We knew,
we knew if she had it.
Speaker 4 (00:26):
It's not curable. It's a genetic change. And so that's
in your body all the time.
Speaker 2 (00:31):
One in three people untreated just don't wake up. Everyone
has their cross to bear. This is my this is
my burden. And now I've got a kid.
Speaker 3 (00:44):
How terrifying would it be to fight an unknown enemy
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half American suffer from some chronic illness,
and many struggle for an accurate diagnosis. These are their stories.
(01:10):
I'm Lauren Bright Pacheco and this is symptomatic.
Speaker 2 (01:19):
I am from a regular, old household family. I have
one older brother, two parents, born just outside of Toronto, Ontario.
Speaker 3 (01:30):
That's Ian Steadman. He is a lawyer, professor, and father
of three. Ian is a thoughtful measured speaker, extremely friendly
and quick with a joke.
Speaker 2 (01:41):
Grew up like a normal suburban kid in a growing community,
went to primary school in a French immersion, and was
raised around all boys playing sports at all times.
Speaker 3 (01:55):
I'm going to wager hockey was involved.
Speaker 2 (01:57):
Hockey yep, definitely, Baseball, five pin bowling was one of
the things that was big back then. My youth was
spent at school and sports.
Speaker 3 (02:08):
Really, so, for somebody who has not had the pleasure
of meeting Ian, how would you describe him?
Speaker 1 (02:19):
Very intellectual? He can be intense, but wickedly funny and
really dedicated to his family and to making a difference
in the world.
Speaker 3 (02:35):
That's Ian's mom, Barb. Barb suffered most of her life
from debilitating headaches, extreme joint pain, and unexplained rashes. When
Ian was born, it was clear to Barb that he
too was afflicted by whatever it was that was causing
her own symptoms. What is your earliest memory of thinking
(02:57):
he might have more in common with you in terms
of your health challenges. Do you remember seeing a symptom
and thinking this is familiar.
Speaker 1 (03:09):
When he was only a few months old, we had
a family cottage and we would go there and I'd
put him under the big shade tree, but he would
come in with red blotches all over his body, and
I thought, I can't put him out there. It must
be the sun. But then even if I had him inside,
he would still get the red blotches, so I knew
(03:31):
that was the same as I had got and he
was only a few months old.
Speaker 3 (03:37):
Your mother also navigated health challenges of her own. Tell
me your earliest childhood memories of realizing that your mother
was living with a health condition and how did that
manifest itself.
Speaker 2 (03:51):
My mother had all the same symptoms. Some of them
will flare and others will not. For her, she got
really bad migraine headaches, and that would be where Mum
was in the bedroom with the lights out, and you
just leave her alone for a day until she resurfaces.
Everything else, when her skin had blotches or her eyes
were red or arthritis, she powered through. My brother never
(04:15):
had the symptoms, obviously, my father never did. And I
ended up with the headaches.
Speaker 3 (04:20):
And when did the headache start?
Speaker 2 (04:22):
When I was in middle school, right grade six, seven eight,
things really started to have an impact on my day
to day where I would be at school and I'd
have to go off to the principal's office to find
a dark room because I had a headache.
Speaker 3 (04:36):
Barb hoped that Ian would be spared from the escalation
of symptoms she knew so well.
Speaker 1 (04:44):
I think you just worry. You worry about how bad
it won't get for him. My hives didn't really get
bad until I was in my twenties, and so his
didn't turn up all the time time, which may be
very relieved. But then as he got to be a teenager,
(05:04):
they turned up almost daily, and that really worried me.
Speaker 3 (05:10):
As Ian got older, he grew more self conscious about
hiding his skin covered in rashes that he did not
know how to explain.
Speaker 2 (05:20):
Kids show up to hockey they could change in the
dressing room. I didn't. I showed up to hockey covered
right long sleeved shirt, long underwear, never removed them. I
would be very careful not to have more skin exposed
than necessary so that I didn't have to have people
looking at me and noticing the difference. Got to a
point where I just wouldn't wear t shirts or shorts
(05:42):
anymore because I didn't want it. Presents as though you
have a disease of some sort or you're reacting to something.
Speaker 3 (05:48):
This rash, read well defined and raised from the skin
was not the only symptom growing more intense for Ian
as he went through puberty and started becoming a teenager.
Now you're going to doctors at the time, So were
you feeling any other symptoms in terms of pain or.
Speaker 2 (06:08):
Aches constantly bloodshot eyes that I couldn't get rid of
the skin rash. I actually now have twenty percent hearing
loss in one of my ears arthritis, so I would
have joint swelling. It wasn't debilitating most of the time.
It was like the ball of my big toe or
my heel or a wrist that got in the way
(06:28):
of sports. As I went into adolescence as well as
the body was growing, What kind.
Speaker 3 (06:34):
Of explanations are you getting in your early adolescence in
teenage years for what's going on?
Speaker 2 (06:40):
The explanation was always basically the scientific way of thing.
I don't know, So chronic idiopathic urticaria was the description
that I got of my skin, which is, I don't know,
arthritis is arthritis, So you just take an anti inflammatory
or a painkiller and that sent you on your way.
They had no idea how to treat that headaches that
they don't know what to do with those, And then
(07:00):
the eyes was the tough one because I would jump
around from optomologist optomologists trying to figure that out. I
was just taking visin over the counter of izing to
take the retiness out whenever I could, but no one
had any explanation.
Speaker 3 (07:12):
Really, every household has a doctor mom. How did your
mom help you treat those and how did she help
you navigate the emotional toll of something that she shared too.
Speaker 2 (07:26):
I think the biggest thing that she did was to
insulate me from the social If there was a day
where I wasn't feeling up for normal, everyday childhood things,
it wasn't made a big deal. It wasn't like I
was letting my family down for not being able to
go to this sport or this activity, or being able
to go to school today. She was always there to
(07:47):
backstop that and to never make me feel like I
like my decision to not do something was a problem,
To never make me feel like I was letting anyone
down by being sick.
Speaker 3 (08:00):
Did that bond you on some levels? And how did
that impact the way you mothered him?
Speaker 1 (08:09):
Yeah, there's a connection because we both had we understood
how the other failed. If Ian said he had a headache,
I knew he had a headache. I didn't have any
doubts about it. When Ian always needed a jacket to
match his outfit, he got it because I knew it
wasn't to match his outfit, it was to cover the hives.
(08:31):
You have an awareness of how you have to care
for him.
Speaker 3 (08:37):
With his mother's guidance, Ian made it through high school
and went off to college to study law, carrying with
him the tools he learned to manage his symptoms.
Speaker 2 (08:48):
When I went away to university in the year two thousand,
I had learned how to deal with it, and so
I stopped worrying about it. I did what my mom
had taught me to do. Right If there was a
tough day where it was just too much, I just
didn't go. I would stay home. I did almost no
extracurriculars when I was away at university. I don't think
(09:09):
it progressed per se, but I do think it became
my burden. My mom couldn't shelter me from it, or
protect me from it, or buffer me from it. It
had to be me figuring out how to manage that.
I'd have flares. I'd go to bed covered in hives.
Wake up, I'd go to exams with my hat low
and sunglasses on, my arms covered up in the middle
(09:31):
of summer. There was a whole bunch of ways in
which the normalcy of life was interrupted by a flare.
Speaker 3 (09:38):
How did you manage academically while dealing with all of that?
Speaker 2 (09:43):
I think the academics were actually an escape from real life.
I mean, I stayed in post secondary for fourteen years.
It's easier to do that than to show up at
work every day. It's easier to sit in front of
your desk and read something and write an essay than
to show up and to have to be physically present
(10:04):
when you don't know what you're dealing with on a
day to day basis.
Speaker 3 (10:09):
Are you still pushing though for a medical explanation at
this point?
Speaker 2 (10:13):
Great question. During my second or third year of university,
there were a couple of weeks where I thought, oh,
I'm in London. Now I'm not in Toronto, Let's go
see what the doctor's hearsay. I ended up with the
same answers from everyone.
Speaker 3 (10:25):
What would those answers have been? How were they offered,
and did you feel dismissed.
Speaker 2 (10:30):
It's not like they didn't meet me and run the
tests and try to figure it out. But nobody was
piecing together anything. It was looking at arthritis and saying, well,
this is how we treat arthritis. Take an ad bill.
It was looking at a headache and saying, we'll take
a tile on all. Here are some eyedrops. It was
the same thing. And because I didn't look like I
was dying, it wasn't important to figure it out. It
was here you go, get on. So I did give up.
(10:52):
At the point when I went to join the workforce,
I had totally given up on searching for answers. I
figured the answer is I just got to navigate this.
I've got to find a way to make it work.
Because everyone has their cross to bear. This is mine,
this is my burden.
Speaker 3 (11:12):
Doctor Ronald Laxer says this experience is common for patients
who can't be diagnosed quickly or with a common condition
that is instantly recognizable.
Speaker 4 (11:24):
Patients will see their family doctor, they're pediatrician. There then
be referred to skin doctors or eye doctors and they
go through their general differential or an approach to disorders
in those systems, and it doesn't fit the usual suspects,
and so they'll often say, well, you don't have all
(11:45):
the things I know about, so sorry, I think you'll
have to live with it. And I think that's what
happened with Ian quite a bit.
Speaker 3 (11:55):
Ian was told on multiple occasions that his symptoms were
not connected. Is that common that a doctor might not
see there is a link?
Speaker 4 (12:07):
Yeah, I think that's the case. Kind of like the
blind man and the elephant, and everybody sees a different
part and calls it a trunk or a tail or
a limb. So I have to find somebody maybe who
knows about these things or is working in that area,
rather than saying I did everything I can, I'm really sorry,
I can't figure this out. And also patients get incredibly
frustrated too, So it's very impactful on the quality of life.
(12:34):
But the hives by themselves or the eye inflammation by
itself isn't going to I don't want to be pejorative,
but it isn't going to kill you. So everybody gets
fed up and they kind of stop looking. This is
what it is. I'm going to have to get used.
Speaker 3 (12:49):
To this, and that is what Ian does. He moves forward,
carrying with him what he believes is his burden alone,
and goes on to fulfill his childhood dream of becoming
a lawyer working in private practice and then moving on
to the office of the Integrity Commissioner in the Legislative
(13:11):
Assembly of Ontario. Although he is succeeding in his career,
Ian symptoms continuously interrupt his ability to function. He is
often forced to ask coworkers to cover for him in
meetings because he can't even open his eyes from the
swelling or is self conscious about the redness. He's even
(13:31):
been forced to work out a system with his boss
in which he hides in her office and closes all
the blinds to ride out one of his horrific sneak
attack headaches. He feels that the disease has forced him
to the sidelines more than once in his career and
in his social life, including dating. Serendipitously, Ian reconnects with
(13:55):
an old friend from high school, Amy, and they fall
in love were.
Speaker 2 (14:00):
Married in two thousand and nine. The family didn't start
until twenty twelve. We were of that generation where we
spent a year or two trying to figure out how
to make a family, and then when it did happen,
our first little girl, now thirteen, was born in twenty twelve.
It's when she joined.
Speaker 3 (14:18):
Us, beautiful. What is her name?
Speaker 2 (14:23):
Her name is Leah.
Speaker 3 (14:24):
Yeah. What do you remember about the day Leah was born?
Speaker 2 (14:30):
I remember very vividly being at the hospital and when
Leah was born what should have been the most joyful
experience of just life when we saw her happy, crying, tears, excitement,
(14:52):
But I saw it. I knew what it was. Immediate
anxiety came in in a moment that should have been
all pure joy and excitement. I saw her skin. It
looked like what I had. She was born basically with
red blotches on her skin. But it's interesting, right because
(15:16):
when a baby is born and you turn to the
doctor and say what's wrong with her skin? They say,
babies are born with they have spots on their skin.
It'll go away. But that doctor doesn't know my story
and my mom's story, our history, doesn't know what I
see when I look in the mirror, doesn't know the
anxiety that I experience every day getting up trying to
figure out what do I got to do today to
(15:37):
navigate my symptoms. That's exact same thing that I think
when I look at her being handed to her mother
as she's born, is oh shit, is she going to
have to live the same life? Did me giving up
on looking for answers just doom this one to the
(15:57):
same existence.
Speaker 3 (16:01):
Ian is not alone in this fhere. Barb also recognizes
the familiar rash.
Speaker 1 (16:08):
Immediately, my first thought was, of course, it's exactly what
Ian and I have. She had the rash. I just
looked at Ian and we just nodded. We knew, we
knew she had it.
Speaker 2 (16:20):
This wasn't just my burden. Something was going on here.
Speaker 3 (16:26):
Ian takes paternity leave to spend more time with Leah
while she grows. Though her first months are full of joy,
love and excitement, this lingering fear of what is to
come for her is ever present in Ian's mind.
Speaker 2 (16:44):
It was in the three months that I took pat leeve,
you know, everything was the same. We had the kid
with the spots.
Speaker 1 (16:49):
That was it.
Speaker 2 (16:50):
It was just the spots. She starts walking, I want
to say, like eleven or nine and a half, ten months,
like it was right in there really early, probably because
she had so many people helping her first born, the
whole family's around right. There was a period just before
one year where she reverted to crawling.
Speaker 1 (17:11):
She stopped walking because as far as Ian could tell,
her hip hurt, she had joint pain.
Speaker 2 (17:18):
As she couldn't walk, something was happening. And that was
before she was verbal. She can't explain what she's experiencing
or going on. And she wasn't crying, but she just
wasn't walking anymore. That was the day the deep feeling
of failure set in, but turned into a motivation, which
was it's not good enough for me to not have
(17:40):
answers anymore.
Speaker 1 (17:43):
More than the hide that motivated him at that point.
It was like nothing stopping me until I figure this out.
He was that good have his oatter go through the
same thing.
Speaker 3 (17:54):
I can't imagine that mix of emotion and ultimately guilt
and not wanting your daughter to suffer those bouts of
shame and insecurity and pain that you had to endure.
Speaker 2 (18:15):
I think you hit the nail on the head with guilt.
It's a feeling like immediately you failed as a parent.
The second feeling you have is I failed them. They
don't know it yet, but I failed them because I
didn't figure this out first. Wow, and that doesn't leave
you like that. Still to this day, that's one of
(18:40):
the motivating animating feelings in my life is a perpetual
fear of continuing to fail your child. At this point,
I've got a master's in philosophy, which is a research
master's a law degree. It wasn't until I had ten
(19:02):
years of post secondary research skills where I had the
gumption to think that I could contribute to the pursuit
of finding an answer. My wife worked at the University
of Toronto at the time, and so we had access
to the library, and so I spent every evening reading
medical journals about hives and rashs.
Speaker 1 (19:25):
He was so determined to figure out what it was.
There were times when we come over and he would
be on the strangest diet because he wanted to know
for it was food, and I thought, who could eat
crawl eggs? Who was doing anything? He read to find
out what was wrong?
Speaker 3 (19:43):
So you become a medical detective.
Speaker 2 (19:45):
I tried. I couldn't read a medical journal for the
life of me. The words that we use in science
are much too large for Ian Stedman. So I was
reading dermatology papers, looking at pictures. Nothing you know where
I ended up ended up on Google Search. I searched
skin rash, and then I scrolled Google Images. This is
(20:05):
pre AIDA's right, So you can't just take a picture
of my own skin, throw it on chatchypt and say
find this.
Speaker 3 (20:10):
No.
Speaker 2 (20:11):
Ian had to scroll, So I scrolled and scrolled and
scrolled and scrolled. The kid goes to bed at eight o'clock.
Wife goes to bed at ten o'clock. I set up
until two o'clock, just scrolling and scrolling and scrolling. I
found one picture and Google Images that looked like me.
Speaker 3 (20:32):
We'll be right back with Symptomatic, a medical mystery podcast.
Now back to Symptomatic, a medical mystery podcast. After months
of scrolling and multiple generations of lived symptoms in his family,
Ian finds a single paragraph in a sea of millions
(20:56):
that stops him in his tracks. Take me to that
exact moment.
Speaker 2 (21:01):
Uh, you know it, it's you know exactly what it is.
I know my rash. I know what this is. I
saw it, I clicked it, and then it took me
to a man's blog who is German? So it was
written in German, so you quickly learned German. Yeah, I
have an image, but I have a trail, right, and
so I could start figuring it out. And so what
(21:23):
I could read on the page that was English enough
for me to figure out was three words muckle Wells syndrome.
Speaker 3 (21:32):
In rome. Muckle Wells syndrome, a condition that at the
time was so rare that it was only cited to
affect one in one million people.
Speaker 2 (21:45):
That was my next clue. That's the bread crumb. And
so I started googling muckle Wells and I find out
there's a couple of different symptoms of muckle Wells. Right,
there's these red eyes, these chronic red eyes. There's these
the skin hives. Obviously it's an inflammatory disease, so the arthritis.
There's headaches. Okay, Now I can go back to those
medical journals and what's in there about muchle Wells, and
(22:08):
I find a paper that pieces together my medical history.
Speaker 1 (22:13):
I kind of hoped that he found something, because if
you have a name for something and you know what
it is, it's easier to handle it, no matter how
devastating it is. It's easier because you know what you're
dealing with. Israel as he described them to me, and
(22:35):
I'm going, yeah, yep, that too. All of this is together.
I couldn't believe it. All kinds of things that I
didn't realize. We're all together, and so wes he said it.
It suddenly made sense.
Speaker 3 (22:47):
It clicked. The more Ian learned about the prognosis of
untreated muchael Wells, the more he understood how significant his
discovery was.
Speaker 2 (22:58):
But one of the things I learned was if you're
not treated, the protein that causes the inflammation actually causes
emiloidosis in one third of Mucklewell's patients by the age
of thirty six, and emiloidosis is kidney failure. It's just
not waking up because the protein has shut down a
(23:21):
vital organ. So one in three people untreated with Mucklewlls
just don't wake up. My mom's over thirty six, so
she seems to have bucked the trend. I'm running up
against it, and now I've got a kid, so there's
three of us. I may have avoided death because my
daughter was born sick. If it wasn't for Leah being sick,
(23:42):
I may be the one in three.
Speaker 3 (23:47):
How do you explain or define Mucklewell's syndrome.
Speaker 4 (23:52):
Muckelwell syndrome is part of a group of disorders which
are genetic in origin, and they're associated with a mutation
and a specific gene. That gene is helpful in helping
us interact with our environment, and it protects us from
infections and from foreign chemicals. When that gene activates, it
(24:14):
brings several molecules together which allow our defense systems to
fight off invading organisms or chemicals which are about to
disturb the body. Now, changes in that gene may lead
to spontaneous activation of those proteins, and they may kick
off an inflammatory cascade that leads to all the signs
(24:35):
and symptoms of fighting off an infection. But there's nothing there.
Speaker 3 (24:40):
Ready with a name. Finally, Ian must figure out his
next steps. So, armed with that information, how do you
go about getting a proper diagnosis?
Speaker 2 (24:51):
Now I'm a researcher. Now I'm a lawyer. As a lawyer,
your job isn't to know the law. It's to know
how to find the answers to legal questions. How to
identify the question and then find the answer. So I
know what the question is? Now, what is Muckael Wells?
So I've found some answers in the medical journals. What's
the next question? Who in Canada knows about muckle Wells.
(25:11):
So I'm googling doctor Canada auto inflammatory and what I
find is two doctors, one at Sick Kids and one
formerly at Sick Kids now in Calgary.
Speaker 3 (25:22):
Enter doctor Ronald Laxer from earlier. Doctor Laxer is one
of the foremost rheumatologists in Canada. Rheumatologists specialize in conditions
affecting the joints, muscles, bones, and connective tissue. Doctor Laxer
is internationally recognized in the field of auto inflammatory disease
(25:42):
and was an inaugural division head at Sick Kids. This
is the moment in Ian's story where their paths cross
and life changes for his family forever.
Speaker 4 (25:55):
I just happened to be in the right place at
the right time for him, and I have been doing
this clinic. It's called auto inflammatory Clinic, and I'm very
interested in these diseases and making the diagnoses and getting
drugs to patience.
Speaker 2 (26:10):
I kind of cold email this talk to her in
the middle of nowhere, and you can imagine like this
is a blur because from the day that I found
the picture to the email to the doctor, like it's
within seventy two hours. I'm just spinning, but I send
him this email. His name is doctor Ron lax Or.
He's a very senior, very respected roeumatologist at Sick Kids.
(26:33):
With this description, with the pictures, with my daughter's story.
I wake up the next day at eight am. I
have a response in my inbox. This is the first
time I've ever spoken to a medical professional and felt
like they listened and understood something and believed me. Was
him replying and saying, I think you're onto something.
Speaker 3 (26:56):
What Ian did not know at the time was that
doctor Laxer received this email while getting ready to present
to a room full of leading rheumatologists.
Speaker 4 (27:10):
I was at a conference in Denmark and I was
presenting a whole bunch of different cases, challenging cases to
the audience and just to see what they think it is,
what kind of tests they would do. And one of
them that I had on my list to present was
Michael Wells. So I talked about the case that I
received a couple of hours before the talk.
Speaker 3 (27:31):
So you were basically unofficially diagnosed by a convention of rheumatologists.
Speaker 2 (27:37):
It's amazing, right.
Speaker 3 (27:40):
What did doctor Laxer say next?
Speaker 2 (27:42):
Get yourself a referral to Sick kids under Leah's name,
come with her.
Speaker 3 (27:47):
I need to see you, okay, so you bring Leah
to see him.
Speaker 2 (27:51):
I actually had to go back to an adult doctor
who I'd seen before, and I told him, I want
to referral to sick kids to see doctor Ron Laxer
for this disease, Michael Wells. And this adult rheumatologist said,
that's not it. I'm not giving you that referral people
with muckle Wells. It's a very severe disease. I don't
see people with that. That's not what you have. So
I had to show him the email from doctor Laxer
(28:14):
saying get in, and then he read the email and
then apparently he had studied under doctor Laxer, and so
when he saw the name on the email, he stopped
second guessing me.
Speaker 4 (28:25):
I'm a pediatrician, so it means in my hospital, I
really can only see patients up to the age of eighteen,
and I have to get permission to see adults. So
I had to do that, and I was pretty confident
based on what Ian had written. And we're a research
hospital and a teaching hospital at the hospital for six children,
and so there are always trainees around and it's very
(28:48):
important for them to see things like this, so if
they see it once, they won't forget it.
Speaker 2 (28:54):
I'm at the Sick Kid's Hospital. I'm thirty two years old.
I'm sitting on a bed in an exam room in
my underwear because he's looking at me. And then all
of a sudden, there's a parade of rheumatologists come in
to Pope kin prod and point and ask questions.
Speaker 4 (29:09):
And I asked aame's permission if I could bring a
group in, and we had about six to ten people
come in. Maybe maybe it was a little bit of
a turnstile sort of thing. Ian was great. He kept
telling the story. Is so important to hear the story.
It was a very memorable day for many of us.
Speaker 2 (29:27):
No one's ever cared before. Right for me in that moment,
I don't care if there's thirty forty to fifty of them.
They're asking me questions. I wasn't just this chronic idiopathic sedment.
Not anymore. Now there's a bunch of people who are
very smart, caring to find out more and ask questions.
Speaker 3 (29:50):
Why do you think it's so important to hear these
patient stories.
Speaker 4 (29:54):
I think they're much more impactful than your sterilized history
where you go through through by wrote a series of questions.
When you hear about the impact that it's having, it,
I think it's much more compelling in terms of making
you want to solve the problem and helping the patients
and families. You hear about the significant impact on their
(30:16):
lives and their education and how they grew up and
how they may have been treated, how they look at
the world, And that's not what you get in your
standard history and physical I think storytelling has become a
much more important part of medicine, much more prominent role
in education, getting people to tell their stories.
Speaker 3 (30:40):
So for thirty two years, you lived your life afraid
of being seen because of the physical manifestations, and this
is the first time you truly feel seen by the
medical community.
Speaker 2 (30:53):
Isn't that something? But I'm also sitting there with my
daughter right I'm at the point now where knowledge is power.
I want an answer, even if the answer is here's
the name of it, but we don't know what to
do with it. Because if I don't have information, I
can't figure out my next step. And I explain to him,
(31:15):
how you know, I haven't worn shorts and t shirts
and years, and one of the most vivid memories I
have in my life bar none, is him turning to
me while I'm sitting there in my underwear and saying,
we'll have you in shorts by summer. And I'll never forget.
I'll never forget him saying that to me, because as
(31:35):
a doctor with a rare disease patient in front of you,
you don't make promises. He's not saying I know what's
wrong with you. He's saying, I have a solution.
Speaker 1 (31:46):
Holy shit.
Speaker 2 (31:48):
The floor drops out right. I'm emotional thinking about the moment.
I can't relive it without reliving it fully. It just
runs through me those things.
Speaker 3 (32:02):
When you got your daughter's diagnosis, you knew that you
had gotten it from the right person and she was
in the best hands possible. Tell me about calling your
mom once you had an official diagnosis.
Speaker 2 (32:16):
I had said, we need to get you in to
get tested as well. So we all have we all
have this record of getting our panels back and the
confirmed Michael Wells diagnosis. Leah first, me, second month, third.
Speaker 1 (32:32):
And so I went in and I already knew that
if that's what I had had and what Leah had
and that's what I had, but they had to confirm
it and it was a relief. It was a relief
to say, Okay, this is what it is. But it
was also for me a little bit of a guilt
trip because I felt this is what.
Speaker 3 (32:51):
I gave them. Once all three generations have received their diagnosis,
they turned to doctor Laxer for treatment. Is it curable
and how is it treated? What's the most effective treatment.
Speaker 4 (33:07):
It's not curable. It's a genetic change and so that's
in your body all the time. But it is very
treatable with drugs that block the proteins that result from
this gene mutation. So it makes these inflammation proteins, and
there are drugs now available which counteract those proteins and
(33:29):
they're extremely effective.
Speaker 3 (33:32):
So what does treatment look like as far as the delivery.
Speaker 2 (33:36):
There's an injectable drug that plugs the protein, so just
stops the body from producing the protein entirely. And the
challenge here now is that it's sixteen thousand dollars every injection,
and there is eight weeks between each injection, so sixteen
thousand dollars every eight weeks for this needle that effectively
takes away my one in three chances of death by thirty.
Speaker 3 (33:58):
Six teen thousand dollars.
Speaker 2 (34:01):
Yeah, and that's a miracle biologic drug for sure.
Speaker 3 (34:05):
Yeah, for you, for your daughter, and for your mother.
Speaker 2 (34:10):
Yes, and that that's the next step in our journey
is how do we get access to this drug?
Speaker 3 (34:15):
At this time, Ian is blessed with a job that
provides his family with the level of health care support
necessary to treat them.
Speaker 2 (34:22):
If I want to change my job, I no longer
have access to the life saving medicine that I need
and my daughter needs. So one of the first things
that we did as a young couple was to sell
the first home we ever owned together and to move
back in with her parents.
Speaker 3 (34:39):
How did you handle that?
Speaker 2 (34:41):
The first thing that I said to her after we
figured out that we had access to this drug was
We'll never be without it. Our daughter can never be
without this medicine. That's always going to be there in
case we need it. And that was not a small decision.
It's a step back in the kind of community society
that I was raised in.
Speaker 3 (35:01):
So now you have a safety net in case of emergency,
but you will need this life sustaining treatment for the
rest of your lives. What are the next steps to
ensure that you all have that access.
Speaker 2 (35:15):
Under doctor Laxer's mentorship, I ended up getting more involved
in learning about health care policy and law. He started
introducing me to people there's a Canadian organization for rare disorders,
and then I ended up getting involved in going to
conferences and learning a little bit more about health policy
in the rare disease space. So that's what we did
(35:36):
with doctor at Laxer's help. We petitioned my wife's employer's
formulary to add the drug. It took eight months and
then they said we've added it to the formulary.
Speaker 3 (35:48):
Formularies are lists of approved medication that are covered. Because
Canada does not have a universal national formulary, these lists
can vary between provinces, territories, and third party insurance providers.
Speaker 2 (36:02):
So now we get to submit for reimbursement. And so
the first time we submitted under her plan, they denied us.
And they denied us because the science was so unsettled
in this space that they said we needed to try
steroids first, So we needed to pump our daughter full
of steroids before they would give her this life saving medicine.
(36:25):
And so doctor laxer, like I said before, just salt
of the earth. Incredible human he just like Hulk. What
they want me to shove? Steroids and a two year
old girl? When the standard of care is published, he
wrote them. He got their decision reversed and we started
to see formularies. Now my mum's formularity had it. And
(36:47):
then slowly over time, every major formulary in Canada has
added this drug.
Speaker 3 (36:54):
That's amazing and you were part of that domino effect
part of it. So tell me the impact that this
miracle drug had on all three of your lives and
how long did it take to see the impact.
Speaker 2 (37:10):
So we took the medicine. We woke up the next
day and it was a light switch. It was all
gone the next day.
Speaker 1 (37:17):
The day I got my first needle was a last
day I had pain. Last day I had a headache,
last day I had hives.
Speaker 3 (37:24):
What was that like?
Speaker 1 (37:26):
That was like the promise of a real retirement, that
retirement where I'm not using a cane. I'm seventy six,
I don't have to use a cane or anything. I
run a walking group. I can be as active as
I want because I don't have a headache and my
eyes are too sorry to go outside. It's like a
(37:47):
life given to me that's not full of limitation.
Speaker 3 (37:52):
And for Leah, how has the treatment affected her life?
Speaker 2 (37:56):
So we're very fortunate that, I would say by the
time we hadn't met, she had just started to become
self aware of the spots. But then the medicine was
a week later and it was gone overnight. So she
never really lived a life where she was self conscious
of any of it. And that's good and bad. It's
something that my wife and I talk about quite a bit.
(38:18):
It's our job to help her experience her baseline of
not being sick right, but at the same time, it's
part of her identity that we have to inform her about.
She's going to have to navigate her adult life of
access to this medicine. She can't just have any job
and any employer and any life she wants. Her life
(38:40):
does have to in some sense revolve around how to
maintain access to a therapeutic that keeps her alive. That's
not a small burden to put on a kid.
Speaker 3 (38:49):
Of course, despite that burden, this treatment works and has
had a profound effect. What have you seen Leah do
in her life? Life that you perhaps struggle to do
in yours.
Speaker 2 (39:04):
She's an athlete, she's her body does what she wants
it to do. She's not limited by it. She's the
youngest kid to ever take this medicine. So technically we
don't really know the long term effects of turning off
this part of your immune system. It's an immunosuppressant. This
(39:24):
protein is part of your immune system when it's properly functioning,
so we don't know the long term effects. She's been
very lucky. There's not much that Leah says I want
to do that she can't do.
Speaker 3 (39:37):
Passionate to help others outside of his family. Ian is
a steering committee member for the Canadian Rare Disease Network,
is the chair of the board for the Canadian Auto
Inflammatory Network, and is a fellow in AI law and
ethics at the Hospital for Sick Children. He has become
a formidable advocate for those like him who are living
(39:59):
with rare diseases.
Speaker 2 (40:00):
When I realized how much information about me was trapped
in my doctor's handwritten notes, Mike doctor when we were diagnosed,
thought that we were number eleven, twelve and thirteen in Canada.
With Michael Wells disease, And I asked him, how do
you know that? He says, well, because I've talked to
other doctors, and that's my guest. It's a ballpark. But
if he wanted to know how the doctor in Nova
Scotia treated their patient with Michael Wells, he'd have to
(40:24):
get the doctor and the patient's permission, And you'd have
to know that they exist first of all, to share
that data, to share their story, to share their medical records.
It's just locked away in cabinets. And I think that's
the power of telling our stories and talking and being
open and engaging with patients and engaging with communities, is
that we're starting to realize that there's so much more
(40:46):
underneath the surface that we didn't see before. Let's just
shine a light on it. Now.
Speaker 3 (40:52):
Are you surprised in any way, shape or form that
Ian's work has now morphed into helping others in the
rare condition space.
Speaker 1 (41:03):
No, I'm not surprised at all. Ian has has always
been a really caring person. To see him now know
that he doesn't have limitations. He doesn't have a day
when he doesn't want to be on camera because verd
eye or hive is wonderful because I've always seen Ian
as a child with enormous potential as a human being
(41:25):
to do whatever he wants. When he found his answer,
just kept going and saying, I'm taking this to everybody.
This isn't surprising at all.
Speaker 3 (41:33):
When you look back at your own life, do you
ever feel a sense of grief for what you may
have lost in those years that you went untreated for
muckle Wells?
Speaker 5 (41:45):
No.
Speaker 1 (41:46):
I think who we are and what happens to us,
this one who makes us who we are. I learned
learned how to deal with pain. I learned how to
be more compassionate to others because my pain wasn't it's
all And I think it's all about moving forward. And
that's what he did. He moved forward and found a
(42:06):
cure for all of us. Though, No, I have no regrets.
Speaker 3 (42:12):
When you look back on your mom's experience with this condition,
the years she's spent struggling, but also the incredible feat
of moving forward despite the tremendous pain and the challenges,
how do you feel.
Speaker 2 (42:29):
There was a point where I thought of my mother's
efforts as not being enough, And it isn't until I've
had time to reflect and to find, for lack of
a better word, grace for what the experience must have
been for her. That I've come to realize the power
(42:52):
of her effort. Whatever the diagnosis has given her, I'm
grateful for, But I'm even more grateful now for what
she was able to give to me despite not having
that diagnosis.
Speaker 3 (43:08):
But I also I.
Speaker 2 (43:09):
Feel relief in the idea that maybe I was able
to pay your jeez, to give her something in return
for that which must have been an impossible effort on
her part in the sacrifices she made to make sure
that I wasn't making sacrifices.
Speaker 3 (43:32):
What do you hope that people take away from Ian's
story and in connection to it, Leah and barb story.
Speaker 4 (43:41):
The power of the patient to not give up, to
continue to advocate if you're convinced about something, don't take
no for an answer. When you listen to stories, it's
not just as adopters. You're listening to some story as
a fellow human being. And we have the same feelings,
(44:05):
We have families, we have children, we empathize completely. I
think that's one of the very important messages of this story.
Speaker 3 (44:13):
A story and a diagnosis that changed three generations of
a family showing up in profound and profoundly simple ways.
Speaker 2 (44:24):
After having the medicine, we went grocery shopping. The family
went it. It was spring, it was almost summer. We
went grocery shopping. It was too cold. But I got
home and I realized that I just went grocery shopping
and shorts and a T shirt. I realized that after
I got home, I hadn't thought about it. And as
it sank in, as it settled in, I sent an
email to doctor Laxer and the woman who was assisting him,
(44:46):
the nurse at the time, and I sent them an
email and I said, I just wanted you to know
that I just went grocery shopping and shorts and a
T shirt. And it's such a nothing burger, but it
so much And to this day, like that's one of
the emails that stands out for him too. How how
(45:07):
it all came full circle. I'll have you in shorts
and then it just happened, And it just happened. I
was comfortable enough to do it without even thinking about it.
Speaker 3 (45:19):
You can learn more about the Canadian auto inflammatory network
at www. Dot auto inflammatory dot CA, Sick KIDCA can
be found online at www dot sick KIDSCA.
Speaker 2 (45:34):
My name is Ian Stedman. I live with a rare
disease called Michael Well syndrome, and I spent thirty two
years looking for a diagnosis before finally landing on one
after my first daughter was born with the same disease.
Speaker 3 (45:53):
Coming up on next week's episode of Symptomatic. For as
long as Sienna Dtree can remember, she's had random bouts
of heavy legs, headaches, and loss of vision. As she
got older, that heavy sensation grew into episodes in which
she could not move altogether.
Speaker 5 (46:12):
I was shaking the director's hand, getting these flowers the
whole nine yards, and my smile it became hard to smile,
and I realized all of my arms and legs were
like starting to feel like really heavy. Everybody else left
the stage, and I couldn't get up to leave the stage.
The band director caught me out side of his eye,
and he came back, and my parents came up from
(46:33):
the audience while Sienna is still on the stage. My
parents took me to the er because they were just like,
this is not normal, even for you.
Speaker 3 (46:44):
Years would pass before Sienna would get a seemingly out
of the blue phone call from her doctor that changed everything.
As always, we would love to hear from you. Send
us your thoughts on this episode, or share a medical
mystery of your own at Symptomatic at iHeartMedia dot com
and please rate and review Symptomatic wherever you get your podcasts.
(47:08):
We'll see you next time, and until then, be well. Symptomatic,
a medical mystery podcast, is a production of iHeartMedia's Ruby Studio.
Our show is hosted by me Lauren Bright Pacheco. Our
executive producers are James Foster, Matt Ramano, and myself. Our
(47:28):
supervising producers are Ryan Ovadia, Haley Aliah Ericsson, and Daniel Ainsworth.
This episode was written by Haley Aliah Ericsson and edited
by Daniel Ainsworth.
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