February 18, 2025 • 37 mins
Kathy Langley opens up about her family's struggles with Huntington disease, sharing her personal journey from the silent pain of knowing her father's condition to advocating for awareness and support in the community. She highlights the emotional complexities surrounding genetic testing decisions and the need for improved education on HD within the healthcare sector. • Kathy’s early experiences with her father's HD symptoms • The emotional impact of discussing HD in the family • The dilemma of wanting children while facing genetic risks • Insights into the testing process and its psychological effects • The role of stigma and the importance of awareness • Advocacy for education on HD for medical professionals • Support mechanisms for families affected by HD • Kathy’s efforts to raise awareness through social media
Demystifying Genetics is sponsored by TrakGene https://www.trakgene.com/
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Episode Transcript
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Matt Burgess (00:01):
Hi, my name is Matt Burgess and I am the host
of Demystifying Genetics.
I am a genetic counsellor withover 20 years clinical
experience.
In this podcast, I speak withguests about genetic conditions
that they may treat asclinicians or that they may have
a more personal connection with.
Today, my guest is CathyLangley.
(00:23):
Her father died from Huntingtondisease.
Join me for a conversationwhere Cathy discusses HD in more
detail and the issuessurrounding pre-symptomatic
testing for this late onsetneurological condition.
Hello, cathy, and welcome tothe Demystifying Genetics
(00:44):
podcast.
Kathy Langley (00:45):
Thank you, I'm happy to be here.
Matt Burgess (00:48):
Now I connected with you on LinkedIn a few
months ago and I saw that youwere posting a lot about
Huntington disease, andHuntington disease is obviously
something sort of close to toyou.
Um, can you tell me, whenyou're talking about Huntington
(01:09):
disease, how do you sort ofdescribe it to someone who
doesn't know what it is or whohave never heard of it before?
Kathy Langley (01:16):
um, I can only describe it as pretty much as it
was described and it's rare.
A rare disease, genetic,neurological, and is fatal, no
cure, and all children born toan affected parent someone's got
(01:37):
HD have got a 50% chance ofinheriting it as well.
Matt Burgess (01:44):
Okay, yeah, no, it sounds like a terrible
condition.
Kathy Langley (01:48):
It is.
Matt Burgess (01:49):
Yeah, so you have quite a strong family history of
Huntington disease.
Yeah, can you tell me sort ofmore about how you realised that
you were part of a HD family?
Kathy Langley (02:06):
You know it's funny.
It was in the adult years I wastold about it, but in hindsight
I could see I've knownsomething was there for a long,
long time.
But it was when I was thinkingof extending my family that my
mother decided she better thiswas after we had lost dad, that
(02:29):
my mother decided she betterthis was after we had lost dad
that she um asked me to sit downso she could tell me why I
shouldn't extend my family.
Matt Burgess (02:36):
Oh, okay, so you.
Kathy Langley (02:37):
You knew so, your dad had Huntington disease yes,
my dad had it and he got itfrom his mum and it went back
further.
Matt Burgess (02:43):
Okay.
So then he passed away, but youhad a husband and you were
thinking of children, and thenyour mum sort of sat you down to
warn you not to have children.
Was that what?
Kathy Langley (02:56):
Yeah, she was.
It was dumped in her head andthat's the words she used by the
specialised doctors and thatthe only way of stamping out
Huntington's disease is to stophaving children.
Speaker 3 (03:11):
Okay.
Kathy Langley (03:12):
And that's exactly what she said to me.
Speaker 3 (03:14):
Yeah.
Kathy Langley (03:16):
And it wasn't until later, much later, that
the testing became available.
Matt Burgess (03:24):
Okay, much later that the testing became
available.
Okay, so how?
What was it like to hear yourmum saying you know, love, I
don't think you should have anychildren well, I have to say.
Kathy Langley (03:35):
First, mum never called me love, but um no for
her to even ask me to sit down.
She had something to tell me.
I knew that that was somethingserious.
Speaker 3 (03:47):
Yeah.
Kathy Langley (03:48):
Because she wasn't in the habit of doing
that.
So just from the word go I knew, okay, what she's going to be
telling me is something serious.
So I listened to her and I said, okay, thank you.
I said okay, thank you.
She had known, they had knownthe extent of it about the time
(04:09):
my dad was, yeah, hospitalisedor whatever.
But they didn't tell me becausethey wanted to protect me,
because I had children already.
But what that did was made medecide no more children, no more
Okay.
I've got my children.
I don't need any more.
Speaker 3 (04:28):
Yeah.
Kathy Langley (04:29):
And I took it on board seriously and then, when
testing became available yearslater, then I had the test.
Matt Burgess (04:39):
Okay, and do you think that your mum had the same
conversation to your brothersand sisters?
Kathy Langley (04:49):
I think she was a little bit more sceptical in
having a word with them becauseat one point she did try to
raise awareness herself andfamily made it quite clear they
did not want that happening.
Speaker 3 (05:05):
Yeah.
Kathy Langley (05:05):
And so because mum, because she was she, miss
Dad, it was like she relied moreon her children to be there for
her and she wasn't going to doanything after that.
She wasn't going to do or sayanything that might, you know,
(05:26):
upset the apple cart, so tospeak.
Speaker 3 (05:29):
Yeah.
Kathy Langley (05:32):
The sister, my first person that died after Dad
.
Yeah, she was aware and I thinkif anyone was able, if Mum was
able to talk with anyone, itwould have been her.
But um, um, other than that, Ithink she just relied on the, um
(05:53):
her children to be able to telltheir prospective partners yeah
, okay, because how old was yourdad when he passed away?
Um 40.
I know I should know this apart, but it was 40, 45 or 48, wow,
okay so mid 40s so yeah, yeahyeah, very young.
Matt Burgess (06:15):
Yeah, I know sort of in the textbooks when we read
about huntington disease theysay sort of the average age of
onset is sort of 30s or 40s, butit can sort of start much
younger or symptoms can startmuch older.
Do you remember a time whereyour dad was sort of normal or?
Kathy Langley (06:36):
oh, yes, yes he changed a lot, which is why I
can look back and think, yeah,okay, he was becoming
symptomatic when I was younger Iwas maybe 15 when I think back
to how we started changing.
Speaker 3 (06:58):
Yeah.
Kathy Langley (06:59):
And it was no longer the happy-go-lucky person
.
No longer the happy-go-luckyperson.
But what happened is and Ithink you'll find a lot of
families that think this way youput it down a lot to work
problems, daily stresses in life, because it was like it just
(07:21):
became more serious and moody,depressed.
But it was such a gradualprocess at the beginning.
Matt Burgess (07:30):
Yeah, I guess it sort of would happen so slowly
that if you're living through ityou may not notice it, but sort
of in hindsight it's sort ofmuch clearer.
Kathy Langley (07:39):
Oh, yes, for sure .
Matt Burgess (07:41):
Yeah, when I sort of describe Huntington disease,
you know, sometimes I say youknow it's sort of like a
combination of Alzheimer's anddementia and Parkinson's.
Yeah.
Kathy Langley (07:55):
The word is ALS, parkinson's and Alzheimer's, all
symptomatically so, alltogether, yeah, and it was years
ago classed as a devil disease.
Speaker 3 (08:08):
Yeah.
Kathy Langley (08:09):
So yes, all that is true.
Matt Burgess (08:12):
So I mean, it sounds like you saw your dad's
personality change in and sortof his mood.
Did he have any of the moresort of physical features of the
disease as well?
Kathy Langley (08:25):
Not till later.
He wasn't jerking in like adrunk, so to speak, which is one
of the things I say.
The jerking can make you looklike you're drunk.
Speaker 3 (08:39):
Yeah.
Kathy Langley (08:39):
He didn't.
There wasn't jerking, but notseverely.
Not in the no not as long as Ican remember okay.
Matt Burgess (08:49):
So do you think he sort of had awareness that
maybe he was affected with thecondition?
Kathy Langley (08:55):
that was in his family.
Yes, yeah um, they all do.
I believe they all do,certainly in my family.
It's one of the things thatfrustrates them, gets them angry
.
The thought of suicide can bethere in place.
(09:15):
There's many here that willthink in suicide.
Speaker 3 (09:20):
Yeah.
Kathy Langley (09:21):
So it's, and especially when they've
witnessed before.
If you're going to hearsomething that you've been
diagnosed and you haven't seenit before, then you might be
less likely to get worked upabout it, but when you have
witnessed before it can befrightening.
Matt Burgess (09:44):
Yeah, I think that's a really good point
because I know when I was sortof helping people through the
testing process, it definitelywas different, for, you know,
there were some people that wererequesting testing that had
never sort of met anyone or seenanyone with Huntington's
disease, yeah, and sort of Ifelt sort of like an obligation
(10:05):
or you know, it was really hardbecause, yeah, it's like they
didn't really appreciate orreally have an understanding of
what we were testing them for,whereas there were other people
where you know, they had seenmany, many family members sort
of get the disease and then passaway and I felt like they
really sort of got it.
Kathy Langley (10:27):
Yeah, yeah, it's, yeah, yeah.
From what I've learnt to morerecently, because I've done my
own research, is there are stilla lot of families out there who
are unaware of it existing, whohave been unaware until
someone's in the family has beendiagnosed, and that too, that
(10:52):
can cause so much hurt andfeeling let down by the family
that they're married into orwhatever.
Matt Burgess (11:03):
You know that's got this disease, so the
potential for sort of likeregret or anger, or yeah, that's
difficult.
Kathy Langley (11:16):
I remember when I learned the extent of it and I
told my husband, he was like,well, I should have known about
this.
And I said, well, it's allright, I probably should have
too.
But I didn't, so I couldn'ttell you, but he handled it well
.
Speaker 3 (11:32):
Okay.
Kathy Langley (11:34):
But not all of them do.
I'll give you an example.
Um in one of the researches Idid um someone told me that they
weren't informed anything aboutit until a week before he got
married.
Matt Burgess (11:49):
Oh, and he said he felt trapped, like he had no
choice to get married yeah youknow, so I guess, on that point
and this is something that I Ido discuss with young people, um
, that are presenting fortesting for huntington disease
(12:11):
when do you think is a good timeto to tell someone like you
know, is it too early to say onthe first date or, you know, do
you wait until you get?
Speaker 3 (12:20):
like it's a very difficult thing to sort of work
out, isn't it?
Kathy Langley (12:23):
oh geez, I've only just recently started
sharing videos of such a thing.
Um, I came across a video of um, a man who was about to tell
his partner, the lady he wasseeing, and he was talking about
the concerns and how she'sgoing to react and all this sort
(12:44):
of thing, and I could onlyimagine it.
You know, yeah, like he said,it was hard.
Are they going to walk out andleave me?
You know, no longer want me intheir life?
And he said that she acceptedit.
And then she looked into it abit more and met his family, his
(13:09):
father having it, and it reallyshook her, but she still went
ahead.
But what they also did was makethem think, really think, about
children.
Yeah, they wanted children, buthow are they going to do it?
And so that goes on to anothersituation of deciding how to
(13:29):
have children without them umbeing affected uh-huh yeah it's
so you're sort of involved with?
Matt Burgess (13:37):
um, you know different people and in the
huntington disease community doyou find that the young people
are talking about how to havechildren and how to have
unaffected children?
Kathy Langley (13:51):
um, I'm not seeing it that much in Australia
, to be honest with you.
You might, but I don't.
I hear in America, for example,where there's more of it, that
they are looking at options.
You know other options, ways ofdoing it, you know allowing it
to happen, how and all that.
(14:12):
But yeah, so there's morethought going into it, but not a
lot here.
I don't think.
Matt Burgess (14:22):
That's just what I've seen yeah, I guess, just
for the listeners sake.
Um, there are ivf techniquesthat people can use to create a
number of embryos and to testthe embryos and then just
implant the unaffected ones.
Kathy Langley (14:40):
Yeah, well, this is what this chap was saying.
They got into that and he saidthat you've got to be so
prepared because he said he feltso guilty watching his wife go
through all the I think it wasfour or five times that she kept
on having to go back and try,each of them having that gene.
Speaker 3 (15:05):
Yeah.
Kathy Langley (15:06):
They had to keep on trying.
And he said and the money isincredible.
The cost is incredible.
Matt Burgess (15:12):
Well, it's like it's stressful, it's expensive.
You know it's time consuming.
You need to take time off work.
Yeah, you know it's not themost romantic way to make a baby
no, but you know, some peoplethink that all of that is worth
it to be able to stop thishorrible disease from being
passed on.
Kathy Langley (15:32):
It's not an easy decision the thing is, he said,
though not everyone can affordto do that cost wise, um,
mentally, you name it, you'rejust not everyone's able to do
it exactly right, yeah and theywere in good mind spaces with
both of them and he said it wasa that was hard on them yeah,
yeah.
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(16:38):
You mentioned that your mumsaid that you know she didn't
tell you because she was tryingto protect you.
What do you think of that ideaof you know?
Let's not share the familysecret, you know, because it'll
just hurt people.
Like let's just sort of youknow, keep it in the closet and
(16:58):
let's not talk about it.
What do you think of that?
Kathy Langley (17:01):
Well, that's why I'm talking about it, because I
don't agree with it.
There's too many people hurt inthe long term.
I've seen too much hurt withnot just my family, but I know
of other families who have.
It's taken them really down toa terrible place, you know.
(17:23):
And children, the children thatget affected they're
traumatised with what theywitness sometimes and so and I
can see how how, um, yeah,families are broken up.
That can split families, um,and I thought you know what.
(17:46):
I've had enough of this uh-huhum, and that was the truth.
I just thought I'd have enoughof this and I'm going to do what
?
Continue on what with what mumhad started all those years ago
and um and raise awareness.
But it started in a.
Really, it wasn't me going outdeliberately to do it, it just
(18:09):
the way it fell into place.
Um, it just sort of, yeah, itjust felt right for me to go as
I am now, which is, um, I wasgoing to write a story and have
that published about the, thedisease itself, but I thought,
no, no, it doesn't feel right,I've got to make noise somehow
(18:33):
elsewise.
And so that's how I got into itum, emailing everywhere.
And, yeah, I started off doingsome talks with Rotary Clubs
uh-huh but I felt I wasn'tgetting heard enough yeah and it
wasn't good for me to keep on,you know, and feeling like I
(18:54):
wasn't being heard enough, andum.
So then I decided, okay, I'lllook into the social media
uh-huh and that's when thingsstarted happening okay.
Matt Burgess (19:08):
So you, you sort of been posting about it and
then people are sort of reactingand picking up on that.
Kathy Langley (19:14):
Yeah, yes, so not all social medias, but one in
particular.
That, I think, has been good.
Speaker 3 (19:21):
Yeah, oh good.
Matt Burgess (19:23):
And so when you like.
So the gene was sort of like.
You know, they've known aboutHuntington disease for many,
many, many years.
And then you, you know, ourgenetic testing knowledge sort
of got much better in the 80sand 90s and then they sort of
isolated the gene and were ableto offer testing to unaffected
(19:48):
people, I think from the mid-90sonwards.
Um, how long had you been sortof thinking about testing before
you were able to have a test?
Kathy Langley (20:01):
It was because testing wasn't even a thought of
.
I don't think.
Well, it was.
I didn't hear about it, put itthat way.
So I think when it becameavailable, I knew straight off
that I was going to have to haveit.
But, I was in a position whereI couldn't have it straight away
.
I was living far away from thetesting place.
(20:23):
I thought it could happen, butI'd say it was.
I don't know, I'm just guessingit was months a year.
Speaker 3 (20:32):
Okay.
Kathy Langley (20:35):
So yeah, I did as soon as as I could.
We'll put it that way.
To me it was just a normal, thenatural thing to do.
It's not for everyone, but itwas for me.
Matt Burgess (20:45):
Perhaps instinctively, I knew that I was
okay okay, you think you sortof knew on some level that you
maybe you were negative yeahyeah yeah, I did.
Kathy Langley (20:57):
It was early on the morning that I was getting
my results.
I thought, oh, what if I'm not?
What if I'm not?
Matt Burgess (21:04):
and do you think that the, the counselling
process, or the, the testingprocess um sort of helped you
like with those kind of thoughts, or do you think that the
testing process was a little bittoo prescribed?
Oh, are you there?
Kathy Langley (21:24):
Yeah, I don't know what happened there Testing
the cancelling.
No, at first I thought oh mygosh, because she told me it'd
be six months of cancelling.
I thought oh my gosh, and shesaid you will get no results
(21:44):
until that's done yeah and um,it was like oh and anyway, I
accepted it and it changed mythinking.
To be honest with you, uh-huh,at the very beginning I thought
I had to sacrifice my life to bethere for my family, hands-on
(22:08):
all the time, yeah, and by thetime that we finished the
counselling, I just knew that Ihad my own family, my own life,
my own problems, and so I knewthat I had to address that but
help where I could otherwise.
Speaker 3 (22:28):
Yeah.
Kathy Langley (22:30):
And because I didn't live close to them
initially, it was a lot of phonecalls.
Speaker 3 (22:37):
Uh-huh.
Kathy Langley (22:39):
And, in all honesty, I think it worked out
better that way, because mum,for instance, would ring me and
I'd be the one to hear her whatshe had to say about the whole
thing, and likewise for mysiblings.
Speaker 3 (22:55):
Uh-huh.
Kathy Langley (22:56):
It gave them a chance to be able to, you know,
ring me or I'd ring them and youknow we'd be able to talk it
all out.
Speaker 3 (23:04):
Yeah.
Kathy Langley (23:06):
So it worked out well for us, I think.
Matt Burgess (23:09):
Okay, because I know when the test became
available and people were ableto sort of access genetic
testing to see whether they weregoing to develop Huntington
disease or not, the, the idea orthe thought was that everyone
who was at risk, would you know,line up and sign up.
But um, what we've kind of seenis, you know, most people
(23:33):
choose not to have testing.
Does that surprise you?
Kathy Langley (23:37):
no no no, because I know it's happened in my
family, but without going theretoo much.
Um, I'm reading about it inother families and um, I've even
been told that they have gonefor the test but they haven't
gone back for the result becausesuddenly they're too scared.
(24:01):
You know, and I understand thatcompletely, I told you the
morning I was going to find outthe results.
I was like, oh what if I'mpositive?
Speaker 3 (24:11):
Yeah.
Kathy Langley (24:13):
And then I thought, oh well, I had kind of
thought, yeah, okay, this iswhat I'll do if I test positive.
When it comes to the reality ofit, you know it was a bit scary
.
Speaker 3 (24:24):
Yeah.
Kathy Langley (24:24):
So I understand how they feel.
But there's also and this Ican't answer for is I'm not in
that position and never beenreally in that position, and so
how can I think like them?
But I sort of think, maybe ifyou're new you can rest easily
(24:49):
or you deal with it in the bestway you can.
But I don't know what it is, butjust a lot of fear.
And yes, it has been said aboutthe insurance side of things,
but how many that is vectoredthat way, I wouldn't know.
But yeah, it's a lot of fear.
(25:13):
And I was talking with someonethe other day who's actually
dealing with a family member, anon-blood family member, in fact
I've talked to a couple of themand one was saying not to even
mention it in the household,it's bad Okay.
(25:39):
Saying not even mention it inthe household, it's it's bad
okay.
And that person's havingtrouble dealing with it because,
um, he can see it standing amile.
All I could do is advise himwho to contact, you know, if he
needs to talk to someone who'scloser to it yeah to me um, it
is, yeah, it's all.
(26:00):
It's all a concern, which is whyI'm trying to turn things
around a little bit, change,make change by getting emailing
politics and that sort of thing,emailing the politicians, that
I can and, like I know, in ourgenetic counseling training we
(26:20):
learn about huntington disease.
Matt Burgess (26:21):
So even though hd is rare as a genetic condition,
it's sort of one of the mostcommon genetic conditions and
genetic counselors and thegenetics doctors definitely know
a lot about h HD.
But what do you think about thelevel of knowledge of
Huntington disease in in therest of the medical community?
Speaker 3 (26:44):
people just don't know about it no that's where
I'm saying we need educationyeah.
Kathy Langley (26:49):
I'm really pushing that strongly.
I even asked my own doctor sometime ago um, do you know
huntington's disease?
He said yes, but I don't knowwhat symptoms to look for.
Yeah, and I said, oh seriously,um, anyway.
So I approached the thereception at that particular
(27:12):
clinic and asked if I was togive them some information,
would she share it with all thedoctors so they could learn
about it?
Speaker 3 (27:20):
Uh-huh.
Kathy Langley (27:21):
And she said yes, definitely.
Matt Burgess (27:23):
So yeah, so the receptionist was able to share
the information with all of thedoctors.
Kathy Langley (27:31):
Yes, yes, she did , and they all learned a lot,
apparently.
Matt Burgess (27:37):
Oh good, and what reception.
How well have you gone withsharing this information with
politicians?
Kathy Langley (27:46):
There's probably very few that I haven't shared
it with Uh-huh, but a politicaladviser has seen me on LinkedIn
I'll mention that name and he'sapproached me and so he said the
(28:07):
awareness is vital and now thatthey've got me talking, that's
going to help a lot in gettingfurther.
Speaker 3 (28:17):
Yeah.
Kathy Langley (28:17):
So he said it is very important we get the
awareness out as much aspossible, because even those
that we approach may not haveheard about it and may not know
the extent of it.
So this is where I have stillgot to step in and give my
(28:38):
experience and see what comesfrom that.
Speaker 3 (28:41):
Yeah.
Kathy Langley (28:43):
But it's good to know that he's there.
He's made it clear I can get intouch with him any time and
update him with anything andhopefully we can get somewhere.
In the meantime.
I am like I'm talking with you.
I've got another podcast comingup next month and that's being
(29:12):
done by someone who was a nurseand is an educator now and she's
very keen to get it going.
Matt Burgess (29:19):
Wow, you're a busy lady, yeah, and you know.
I know we were talking sort ofoff air a little bit before.
You mentioned that you wrote abook.
Yeah, and I guess when I heardthat you had written a book, I
thought it was to educate otherpeople, but you sort of
explained that it was moresomething that you wanted to do
(29:42):
for yourself and for your family, that's right.
Can you tell me a little bitmore about your book?
Kathy Langley (29:48):
Yeah, sure, it was a book that had nothing to
do with HD whatsoever, but inlooking into it, was a book for
my mother's birthday.
Speaker 3 (29:58):
Uh-huh.
Kathy Langley (30:00):
We got pretty much all her story out when she
passed and I sort of looked atit and I thought, well, thank
goodness I managed to get what Icould, you know, learn from her
about her family.
And then I started thinkingabout things and I thought, well
, I'll go into Dad's family alittle bit more because she
(30:23):
married him, and that led medown a complete different path.
Speaker 3 (30:30):
Yes.
Kathy Langley (30:32):
That led me into hunting for the disease in a
good and proper way, and I gotso much information from doing
that because I just thecuriosity in me just got to a
point where I had to keepfollowing up until I got the
answers I wanted.
Speaker 3 (30:48):
Uh-huh.
Kathy Langley (30:49):
And so I had researched through death
certificates, hospital files,cemeteries, you name it Trove
newspaper.
That was a good one, becauseyou go back in time with that,
(31:14):
and then I sort of put a lot ofthese.
It's like a huge jigsaw puzzle.
I'm putting all the piecestogether.
And then I remembered we've gotsome step family elsewhere.
So I contacted them and I gotsome answers there and I was
wrecked.
(31:34):
You know what I learned fromthat?
It's the importance of lookinginto family history.
Matt Burgess (31:41):
Okay.
Kathy Langley (31:41):
That was the big learning thing there.
That's another thing I forgotto mention the war notices,
because when you've lost people,we don't know whether we've
lost them to war or or whatever.
Yeah, what I found was some didgo to war, they did come back
(32:04):
with injuries and that, buttheir actual um, they were later
diagnosed so so their thefamily history was is huge so
when you say the importance ofthe family history, do you mean
that it's important for youngerpeople or younger generations to
find out and talk about theconditions in their family?
Matt Burgess (32:29):
Is that sort of what you mean?
Kathy Langley (32:30):
Yeah, but it's not just Huntington's disease.
You can look in your familyhistory and you can learn other
things that could be.
You know, the genetics could bein your blood, sort of thing.
You know, uh-huh, heart phasecancers, anything like that can
be handy for anyone.
(32:50):
In this case, my case, it wasHD and it told me um, who had it
, how common, how, how many hadit?
Um, and how, especially whenthey're in the hospital.
It talked about the hospitalfiles, talked about their um
day-to-day activities, behaviors, um, mood, all that sort of
(33:16):
thing.
It gets very in-depth becausethey're monitored every day and
it was through that I learnedjust how my grandmother died and
you know they're just so goodto get into.
You know, especially if youthink that there's a possibility
(33:38):
of some disease likeHuntington's you know, yeah,
there's a possibility of it thencheck it out, you know, don't
be too scared yeah, okay and andhow do you think we can support
our like the people that arecaring for people with
Huntington disease?
Matt Burgess (33:56):
like it's such a a hard, terrible, nasty condition
and but people that areaffected, especially sort of in
the later stages, do need a lotof care and support and that
must be incredibly difficult.
Kathy Langley (34:13):
Yes, and I've heard a few stories about that
too, um, so what I would likeand I have mentioned this, to
have said this to thepoliticians is um education for
all who are supporting familiesthe, the individuals and their
(34:37):
families.
I'm talking about healthcare,I'm talking about social service
, I'm talking about anyone inthose areas who are likely to be
supporting Huntington's diseasepeople and their families, and
I'm also aware that they'regoing to be um.
(34:57):
There's different, differentcategories of where they're
likely to be um, educated, liketo be caring for them.
There'll be some that have beena more severe, there'll be some
that have been not, not assevere, and that's where I've
suggested well, how about youhave focus?
It's on the area where theywork, how about they assist in,
(35:23):
how much are they trained withit, how much are they educated?
You know, but everyone needs tohave an online access to
education in some form.
Everyone so it education in someform, uh-huh Everyone, so it's
in those areas, and I also thinkit's very important that family
(35:46):
are aware that that's been doneso they can feel better about
it too, because so many havetold me about their concerns
about the lack of education.
Yeah, like people just notknowing or never heard of the
condition yeah, yeah, I also seethat, if it can start from the
main ones, um, go through morelike teachers for the children,
(36:08):
you know, the students who go toschool, who are living with
this at home, for the teachersto have an understanding of it,
you know.
So it all flow on.
That's my, my plan, my goalexcellent.
Matt Burgess (36:24):
Well, congratulations on working um
towards that goal and thank youfor your time tonight.
Was there anything else beforewe finish up that maybe you
wanted to to say that we haven'tsort of mentioned, or do you
think we've covered most of thethings you wanted to say?
Kathy Langley (36:40):
I think we've covered much.
Just say I'm trying hard.
Matt Burgess (36:45):
Well, I think you're doing a great job and,
yeah, I'm grateful, or I'm happy, that I'm able to help in my
little way myself.
Thank you.
Yeah well, thank you for yourtime and I wish you all the best
with raising awareness aboutHuntington disease.
Kathy Langley (37:06):
No worries.
Thank you very much for havingme, and I appreciate it.
Matt Burgess (37:09):
Okay, thanks, cathy, bye, bye, bye, bye.
Hi, my name is Matt Burgess and I am the host
of Demystifying Genetics.
I am a genetic counsellor withover 20 years clinical
experience.
In this podcast, I speak withguests about genetic conditions
that they may treat asclinicians or that they may have
a more personal connection with.
Today, my guest is CathyLangley.
(00:23):
Her father died from Huntingtondisease.
Join me for a conversationwhere Cathy discusses HD in more
detail and the issuessurrounding pre-symptomatic
testing for this late onsetneurological condition.
Hello, cathy, and welcome tothe Demystifying Genetics
(00:44):
podcast.
Kathy Langley (00:45):
Thank you, I'm happy to be here.
Matt Burgess (00:48):
Now I connected with you on LinkedIn a few
months ago and I saw that youwere posting a lot about
Huntington disease, andHuntington disease is obviously
something sort of close to toyou.
Um, can you tell me, whenyou're talking about Huntington
(01:09):
disease, how do you sort ofdescribe it to someone who
doesn't know what it is or whohave never heard of it before?
Kathy Langley (01:16):
um, I can only describe it as pretty much as it
was described and it's rare.
A rare disease, genetic,neurological, and is fatal, no
cure, and all children born toan affected parent someone's got
(01:37):
HD have got a 50% chance ofinheriting it as well.
Matt Burgess (01:44):
Okay, yeah, no, it sounds like a terrible
condition.
Kathy Langley (01:48):
It is.
Matt Burgess (01:49):
Yeah, so you have quite a strong family history of
Huntington disease.
Yeah, can you tell me sort ofmore about how you realised that
you were part of a HD family?
Kathy Langley (02:06):
You know it's funny.
It was in the adult years I wastold about it, but in hindsight
I could see I've knownsomething was there for a long,
long time.
But it was when I was thinkingof extending my family that my
mother decided she better thiswas after we had lost dad, that
(02:29):
my mother decided she betterthis was after we had lost dad
that she um asked me to sit downso she could tell me why I
shouldn't extend my family.
Matt Burgess (02:36):
Oh, okay, so you.
Kathy Langley (02:37):
You knew so, your dad had Huntington disease yes,
my dad had it and he got itfrom his mum and it went back
further.
Matt Burgess (02:43):
Okay.
So then he passed away, but youhad a husband and you were
thinking of children, and thenyour mum sort of sat you down to
warn you not to have children.
Was that what?
Kathy Langley (02:56):
Yeah, she was.
It was dumped in her head andthat's the words she used by the
specialised doctors and thatthe only way of stamping out
Huntington's disease is to stophaving children.
Speaker 3 (03:11):
Okay.
Kathy Langley (03:12):
And that's exactly what she said to me.
Speaker 3 (03:14):
Yeah.
Kathy Langley (03:16):
And it wasn't until later, much later, that
the testing became available.
Matt Burgess (03:24):
Okay, much later that the testing became
available.
Okay, so how?
What was it like to hear yourmum saying you know, love, I
don't think you should have anychildren well, I have to say.
Kathy Langley (03:35):
First, mum never called me love, but um no for
her to even ask me to sit down.
She had something to tell me.
I knew that that was somethingserious.
Speaker 3 (03:47):
Yeah.
Kathy Langley (03:48):
Because she wasn't in the habit of doing
that.
So just from the word go I knew, okay, what she's going to be
telling me is something serious.
So I listened to her and I said, okay, thank you.
I said okay, thank you.
She had known, they had knownthe extent of it about the time
(04:09):
my dad was, yeah, hospitalisedor whatever.
But they didn't tell me becausethey wanted to protect me,
because I had children already.
But what that did was made medecide no more children, no more
Okay.
I've got my children.
I don't need any more.
Speaker 3 (04:28):
Yeah.
Kathy Langley (04:29):
And I took it on board seriously and then, when
testing became available yearslater, then I had the test.
Matt Burgess (04:39):
Okay, and do you think that your mum had the same
conversation to your brothersand sisters?
Kathy Langley (04:49):
I think she was a little bit more sceptical in
having a word with them becauseat one point she did try to
raise awareness herself andfamily made it quite clear they
did not want that happening.
Speaker 3 (05:05):
Yeah.
Kathy Langley (05:05):
And so because mum, because she was she, miss
Dad, it was like she relied moreon her children to be there for
her and she wasn't going to doanything after that.
She wasn't going to do or sayanything that might, you know,
(05:26):
upset the apple cart, so tospeak.
Speaker 3 (05:29):
Yeah.
Kathy Langley (05:32):
The sister, my first person that died after Dad
.
Yeah, she was aware and I thinkif anyone was able, if Mum was
able to talk with anyone, itwould have been her.
But um, um, other than that, Ithink she just relied on the, um
(05:53):
her children to be able to telltheir prospective partners yeah
, okay, because how old was yourdad when he passed away?
Um 40.
I know I should know this apart, but it was 40, 45 or 48, wow,
okay so mid 40s so yeah, yeahyeah, very young.
Matt Burgess (06:15):
Yeah, I know sort of in the textbooks when we read
about huntington disease theysay sort of the average age of
onset is sort of 30s or 40s, butit can sort of start much
younger or symptoms can startmuch older.
Do you remember a time whereyour dad was sort of normal or?
Kathy Langley (06:36):
oh, yes, yes he changed a lot, which is why I
can look back and think, yeah,okay, he was becoming
symptomatic when I was younger Iwas maybe 15 when I think back
to how we started changing.
Speaker 3 (06:58):
Yeah.
Kathy Langley (06:59):
And it was no longer the happy-go-lucky person
.
No longer the happy-go-luckyperson.
But what happened is and Ithink you'll find a lot of
families that think this way youput it down a lot to work
problems, daily stresses in life, because it was like it just
(07:21):
became more serious and moody,depressed.
But it was such a gradualprocess at the beginning.
Matt Burgess (07:30):
Yeah, I guess it sort of would happen so slowly
that if you're living through ityou may not notice it, but sort
of in hindsight it's sort ofmuch clearer.
Kathy Langley (07:39):
Oh, yes, for sure .
Matt Burgess (07:41):
Yeah, when I sort of describe Huntington disease,
you know, sometimes I say youknow it's sort of like a
combination of Alzheimer's anddementia and Parkinson's.
Yeah.
Kathy Langley (07:55):
The word is ALS, parkinson's and Alzheimer's, all
symptomatically so, alltogether, yeah, and it was years
ago classed as a devil disease.
Speaker 3 (08:08):
Yeah.
Kathy Langley (08:09):
So yes, all that is true.
Matt Burgess (08:12):
So I mean, it sounds like you saw your dad's
personality change in and sortof his mood.
Did he have any of the moresort of physical features of the
disease as well?
Kathy Langley (08:25):
Not till later.
He wasn't jerking in like adrunk, so to speak, which is one
of the things I say.
The jerking can make you looklike you're drunk.
Speaker 3 (08:39):
Yeah.
Kathy Langley (08:39):
He didn't.
There wasn't jerking, but notseverely.
Not in the no not as long as Ican remember okay.
Matt Burgess (08:49):
So do you think he sort of had awareness that
maybe he was affected with thecondition?
Kathy Langley (08:55):
that was in his family.
Yes, yeah um, they all do.
I believe they all do,certainly in my family.
It's one of the things thatfrustrates them, gets them angry
.
The thought of suicide can bethere in place.
(09:15):
There's many here that willthink in suicide.
Speaker 3 (09:20):
Yeah.
Kathy Langley (09:21):
So it's, and especially when they've
witnessed before.
If you're going to hearsomething that you've been
diagnosed and you haven't seenit before, then you might be
less likely to get worked upabout it, but when you have
witnessed before it can befrightening.
Matt Burgess (09:44):
Yeah, I think that's a really good point
because I know when I was sortof helping people through the
testing process, it definitelywas different, for, you know,
there were some people that wererequesting testing that had
never sort of met anyone or seenanyone with Huntington's
disease, yeah, and sort of Ifelt sort of like an obligation
(10:05):
or you know, it was really hardbecause, yeah, it's like they
didn't really appreciate orreally have an understanding of
what we were testing them for,whereas there were other people
where you know, they had seenmany, many family members sort
of get the disease and then passaway and I felt like they
really sort of got it.
Kathy Langley (10:27):
Yeah, yeah, it's, yeah, yeah.
From what I've learnt to morerecently, because I've done my
own research, is there are stilla lot of families out there who
are unaware of it existing, whohave been unaware until
someone's in the family has beendiagnosed, and that too, that
(10:52):
can cause so much hurt andfeeling let down by the family
that they're married into orwhatever.
Matt Burgess (11:03):
You know that's got this disease, so the
potential for sort of likeregret or anger, or yeah, that's
difficult.
Kathy Langley (11:16):
I remember when I learned the extent of it and I
told my husband, he was like,well, I should have known about
this.
And I said, well, it's allright, I probably should have
too.
But I didn't, so I couldn'ttell you, but he handled it well
.
Speaker 3 (11:32):
Okay.
Kathy Langley (11:34):
But not all of them do.
I'll give you an example.
Um in one of the researches Idid um someone told me that they
weren't informed anything aboutit until a week before he got
married.
Matt Burgess (11:49):
Oh, and he said he felt trapped, like he had no
choice to get married yeah youknow, so I guess, on that point
and this is something that I Ido discuss with young people, um
, that are presenting fortesting for huntington disease
(12:11):
when do you think is a good timeto to tell someone like you
know, is it too early to say onthe first date or, you know, do
you wait until you get?
Speaker 3 (12:20):
like it's a very difficult thing to sort of work
out, isn't it?
Kathy Langley (12:23):
oh geez, I've only just recently started
sharing videos of such a thing.
Um, I came across a video of um, a man who was about to tell
his partner, the lady he wasseeing, and he was talking about
the concerns and how she'sgoing to react and all this sort
(12:44):
of thing, and I could onlyimagine it.
You know, yeah, like he said,it was hard.
Are they going to walk out andleave me?
You know, no longer want me intheir life?
And he said that she acceptedit.
And then she looked into it abit more and met his family, his
(13:09):
father having it, and it reallyshook her, but she still went
ahead.
But what they also did was makethem think, really think, about
children.
Yeah, they wanted children, buthow are they going to do it?
And so that goes on to anothersituation of deciding how to
(13:29):
have children without them umbeing affected uh-huh yeah it's
so you're sort of involved with?
Matt Burgess (13:37):
um, you know different people and in the
huntington disease community doyou find that the young people
are talking about how to havechildren and how to have
unaffected children?
Kathy Langley (13:51):
um, I'm not seeing it that much in Australia
, to be honest with you.
You might, but I don't.
I hear in America, for example,where there's more of it, that
they are looking at options.
You know other options, ways ofdoing it, you know allowing it
to happen, how and all that.
(14:12):
But yeah, so there's morethought going into it, but not a
lot here.
I don't think.
Matt Burgess (14:22):
That's just what I've seen yeah, I guess, just
for the listeners sake.
Um, there are ivf techniquesthat people can use to create a
number of embryos and to testthe embryos and then just
implant the unaffected ones.
Kathy Langley (14:40):
Yeah, well, this is what this chap was saying.
They got into that and he saidthat you've got to be so
prepared because he said he feltso guilty watching his wife go
through all the I think it wasfour or five times that she kept
on having to go back and try,each of them having that gene.
Speaker 3 (15:05):
Yeah.
Kathy Langley (15:06):
They had to keep on trying.
And he said and the money isincredible.
The cost is incredible.
Matt Burgess (15:12):
Well, it's like it's stressful, it's expensive.
You know it's time consuming.
You need to take time off work.
Yeah, you know it's not themost romantic way to make a baby
no, but you know, some peoplethink that all of that is worth
it to be able to stop thishorrible disease from being
passed on.
Kathy Langley (15:32):
It's not an easy decision the thing is, he said,
though not everyone can affordto do that cost wise, um,
mentally, you name it, you'rejust not everyone's able to do
it exactly right, yeah and theywere in good mind spaces with
both of them and he said it wasa that was hard on them yeah,
yeah.
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(16:38):
You mentioned that your mumsaid that you know she didn't
tell you because she was tryingto protect you.
What do you think of that ideaof you know?
Let's not share the familysecret, you know, because it'll
just hurt people.
Like let's just sort of youknow, keep it in the closet and
(16:58):
let's not talk about it.
What do you think of that?
Kathy Langley (17:01):
Well, that's why I'm talking about it, because I
don't agree with it.
There's too many people hurt inthe long term.
I've seen too much hurt withnot just my family, but I know
of other families who have.
It's taken them really down toa terrible place, you know.
(17:23):
And children, the children thatget affected they're
traumatised with what theywitness sometimes and so and I
can see how how, um, yeah,families are broken up.
That can split families, um,and I thought you know what.
(17:46):
I've had enough of this uh-huhum, and that was the truth.
I just thought I'd have enoughof this and I'm going to do what
?
Continue on what with what mumhad started all those years ago
and um and raise awareness.
But it started in a.
Really, it wasn't me going outdeliberately to do it, it just
(18:09):
the way it fell into place.
Um, it just sort of, yeah, itjust felt right for me to go as
I am now, which is, um, I wasgoing to write a story and have
that published about the, thedisease itself, but I thought,
no, no, it doesn't feel right,I've got to make noise somehow
(18:33):
elsewise.
And so that's how I got into itum, emailing everywhere.
And, yeah, I started off doingsome talks with Rotary Clubs
uh-huh but I felt I wasn'tgetting heard enough yeah and it
wasn't good for me to keep on,you know, and feeling like I
(18:54):
wasn't being heard enough, andum.
So then I decided, okay, I'lllook into the social media
uh-huh and that's when thingsstarted happening okay.
Matt Burgess (19:08):
So you, you sort of been posting about it and
then people are sort of reactingand picking up on that.
Kathy Langley (19:14):
Yeah, yes, so not all social medias, but one in
particular.
That, I think, has been good.
Speaker 3 (19:21):
Yeah, oh good.
Matt Burgess (19:23):
And so when you like.
So the gene was sort of like.
You know, they've known aboutHuntington disease for many,
many, many years.
And then you, you know, ourgenetic testing knowledge sort
of got much better in the 80sand 90s and then they sort of
isolated the gene and were ableto offer testing to unaffected
(19:48):
people, I think from the mid-90sonwards.
Um, how long had you been sortof thinking about testing before
you were able to have a test?
Kathy Langley (20:01):
It was because testing wasn't even a thought of
.
I don't think.
Well, it was.
I didn't hear about it, put itthat way.
So I think when it becameavailable, I knew straight off
that I was going to have to haveit.
But, I was in a position whereI couldn't have it straight away
.
I was living far away from thetesting place.
(20:23):
I thought it could happen, butI'd say it was.
I don't know, I'm just guessingit was months a year.
Speaker 3 (20:32):
Okay.
Kathy Langley (20:35):
So yeah, I did as soon as as I could.
We'll put it that way.
To me it was just a normal, thenatural thing to do.
It's not for everyone, but itwas for me.
Matt Burgess (20:45):
Perhaps instinctively, I knew that I was
okay okay, you think you sortof knew on some level that you
maybe you were negative yeahyeah yeah, I did.
Kathy Langley (20:57):
It was early on the morning that I was getting
my results.
I thought, oh, what if I'm not?
What if I'm not?
Matt Burgess (21:04):
and do you think that the, the counselling
process, or the, the testingprocess um sort of helped you
like with those kind of thoughts, or do you think that the
testing process was a little bittoo prescribed?
Oh, are you there?
Kathy Langley (21:24):
Yeah, I don't know what happened there Testing
the cancelling.
No, at first I thought oh mygosh, because she told me it'd
be six months of cancelling.
I thought oh my gosh, and shesaid you will get no results
(21:44):
until that's done yeah and um,it was like oh and anyway, I
accepted it and it changed mythinking.
To be honest with you, uh-huh,at the very beginning I thought
I had to sacrifice my life to bethere for my family, hands-on
(22:08):
all the time, yeah, and by thetime that we finished the
counselling, I just knew that Ihad my own family, my own life,
my own problems, and so I knewthat I had to address that but
help where I could otherwise.
Speaker 3 (22:28):
Yeah.
Kathy Langley (22:30):
And because I didn't live close to them
initially, it was a lot of phonecalls.
Speaker 3 (22:37):
Uh-huh.
Kathy Langley (22:39):
And, in all honesty, I think it worked out
better that way, because mum,for instance, would ring me and
I'd be the one to hear her whatshe had to say about the whole
thing, and likewise for mysiblings.
Speaker 3 (22:55):
Uh-huh.
Kathy Langley (22:56):
It gave them a chance to be able to, you know,
ring me or I'd ring them and youknow we'd be able to talk it
all out.
Speaker 3 (23:04):
Yeah.
Kathy Langley (23:06):
So it worked out well for us, I think.
Matt Burgess (23:09):
Okay, because I know when the test became
available and people were ableto sort of access genetic
testing to see whether they weregoing to develop Huntington
disease or not, the, the idea orthe thought was that everyone
who was at risk, would you know,line up and sign up.
But um, what we've kind of seenis, you know, most people
(23:33):
choose not to have testing.
Does that surprise you?
Kathy Langley (23:37):
no no no, because I know it's happened in my
family, but without going theretoo much.
Um, I'm reading about it inother families and um, I've even
been told that they have gonefor the test but they haven't
gone back for the result becausesuddenly they're too scared.
(24:01):
You know, and I understand thatcompletely, I told you the
morning I was going to find outthe results.
I was like, oh what if I'mpositive?
Speaker 3 (24:11):
Yeah.
Kathy Langley (24:13):
And then I thought, oh well, I had kind of
thought, yeah, okay, this iswhat I'll do if I test positive.
When it comes to the reality ofit, you know it was a bit scary
.
Speaker 3 (24:24):
Yeah.
Kathy Langley (24:24):
So I understand how they feel.
But there's also and this Ican't answer for is I'm not in
that position and never beenreally in that position, and so
how can I think like them?
But I sort of think, maybe ifyou're new you can rest easily
(24:49):
or you deal with it in the bestway you can.
But I don't know what it is, butjust a lot of fear.
And yes, it has been said aboutthe insurance side of things,
but how many that is vectoredthat way, I wouldn't know.
But yeah, it's a lot of fear.
(25:13):
And I was talking with someonethe other day who's actually
dealing with a family member, anon-blood family member, in fact
I've talked to a couple of themand one was saying not to even
mention it in the household,it's bad Okay.
(25:39):
Saying not even mention it inthe household, it's it's bad
okay.
And that person's havingtrouble dealing with it because,
um, he can see it standing amile.
All I could do is advise himwho to contact, you know, if he
needs to talk to someone who'scloser to it yeah to me um, it
is, yeah, it's all.
(26:00):
It's all a concern, which is whyI'm trying to turn things
around a little bit, change,make change by getting emailing
politics and that sort of thing,emailing the politicians, that
I can and, like I know, in ourgenetic counseling training we
(26:20):
learn about huntington disease.
Matt Burgess (26:21):
So even though hd is rare as a genetic condition,
it's sort of one of the mostcommon genetic conditions and
genetic counselors and thegenetics doctors definitely know
a lot about h HD.
But what do you think about thelevel of knowledge of
Huntington disease in in therest of the medical community?
Speaker 3 (26:44):
people just don't know about it no that's where
I'm saying we need educationyeah.
Kathy Langley (26:49):
I'm really pushing that strongly.
I even asked my own doctor sometime ago um, do you know
huntington's disease?
He said yes, but I don't knowwhat symptoms to look for.
Yeah, and I said, oh seriously,um, anyway.
So I approached the thereception at that particular
(27:12):
clinic and asked if I was togive them some information,
would she share it with all thedoctors so they could learn
about it?
Speaker 3 (27:20):
Uh-huh.
Kathy Langley (27:21):
And she said yes, definitely.
Matt Burgess (27:23):
So yeah, so the receptionist was able to share
the information with all of thedoctors.
Kathy Langley (27:31):
Yes, yes, she did , and they all learned a lot,
apparently.
Matt Burgess (27:37):
Oh good, and what reception.
How well have you gone withsharing this information with
politicians?
Kathy Langley (27:46):
There's probably very few that I haven't shared
it with Uh-huh, but a politicaladviser has seen me on LinkedIn
I'll mention that name and he'sapproached me and so he said the
(28:07):
awareness is vital and now thatthey've got me talking, that's
going to help a lot in gettingfurther.
Speaker 3 (28:17):
Yeah.
Kathy Langley (28:17):
So he said it is very important we get the
awareness out as much aspossible, because even those
that we approach may not haveheard about it and may not know
the extent of it.
So this is where I have stillgot to step in and give my
(28:38):
experience and see what comesfrom that.
Speaker 3 (28:41):
Yeah.
Kathy Langley (28:43):
But it's good to know that he's there.
He's made it clear I can get intouch with him any time and
update him with anything andhopefully we can get somewhere.
In the meantime.
I am like I'm talking with you.
I've got another podcast comingup next month and that's being
(29:12):
done by someone who was a nurseand is an educator now and she's
very keen to get it going.
Matt Burgess (29:19):
Wow, you're a busy lady, yeah, and you know.
I know we were talking sort ofoff air a little bit before.
You mentioned that you wrote abook.
Yeah, and I guess when I heardthat you had written a book, I
thought it was to educate otherpeople, but you sort of
explained that it was moresomething that you wanted to do
(29:42):
for yourself and for your family, that's right.
Can you tell me a little bitmore about your book?
Kathy Langley (29:48):
Yeah, sure, it was a book that had nothing to
do with HD whatsoever, but inlooking into it, was a book for
my mother's birthday.
Speaker 3 (29:58):
Uh-huh.
Kathy Langley (30:00):
We got pretty much all her story out when she
passed and I sort of looked atit and I thought, well, thank
goodness I managed to get what Icould, you know, learn from her
about her family.
And then I started thinkingabout things and I thought, well
, I'll go into Dad's family alittle bit more because she
(30:23):
married him, and that led medown a complete different path.
Speaker 3 (30:30):
Yes.
Kathy Langley (30:32):
That led me into hunting for the disease in a
good and proper way, and I gotso much information from doing
that because I just thecuriosity in me just got to a
point where I had to keepfollowing up until I got the
answers I wanted.
Speaker 3 (30:48):
Uh-huh.
Kathy Langley (30:49):
And so I had researched through death
certificates, hospital files,cemeteries, you name it Trove
newspaper.
That was a good one, becauseyou go back in time with that,
(31:14):
and then I sort of put a lot ofthese.
It's like a huge jigsaw puzzle.
I'm putting all the piecestogether.
And then I remembered we've gotsome step family elsewhere.
So I contacted them and I gotsome answers there and I was
wrecked.
(31:34):
You know what I learned fromthat?
It's the importance of lookinginto family history.
Matt Burgess (31:41):
Okay.
Kathy Langley (31:41):
That was the big learning thing there.
That's another thing I forgotto mention the war notices,
because when you've lost people,we don't know whether we've
lost them to war or or whatever.
Yeah, what I found was some didgo to war, they did come back
(32:04):
with injuries and that, buttheir actual um, they were later
diagnosed so so their thefamily history was is huge so
when you say the importance ofthe family history, do you mean
that it's important for youngerpeople or younger generations to
find out and talk about theconditions in their family?
Matt Burgess (32:29):
Is that sort of what you mean?
Kathy Langley (32:30):
Yeah, but it's not just Huntington's disease.
You can look in your familyhistory and you can learn other
things that could be.
You know, the genetics could bein your blood, sort of thing.
You know, uh-huh, heart phasecancers, anything like that can
be handy for anyone.
(32:50):
In this case, my case, it wasHD and it told me um, who had it
, how common, how, how many hadit?
Um, and how, especially whenthey're in the hospital.
It talked about the hospitalfiles, talked about their um
day-to-day activities, behaviors, um, mood, all that sort of
(33:16):
thing.
It gets very in-depth becausethey're monitored every day and
it was through that I learnedjust how my grandmother died and
you know they're just so goodto get into.
You know, especially if youthink that there's a possibility
(33:38):
of some disease likeHuntington's you know, yeah,
there's a possibility of it thencheck it out, you know, don't
be too scared yeah, okay and andhow do you think we can support
our like the people that arecaring for people with
Huntington disease?
Matt Burgess (33:56):
like it's such a a hard, terrible, nasty condition
and but people that areaffected, especially sort of in
the later stages, do need a lotof care and support and that
must be incredibly difficult.
Kathy Langley (34:13):
Yes, and I've heard a few stories about that
too, um, so what I would likeand I have mentioned this, to
have said this to thepoliticians is um education for
all who are supporting familiesthe, the individuals and their
(34:37):
families.
I'm talking about healthcare,I'm talking about social service
, I'm talking about anyone inthose areas who are likely to be
supporting Huntington's diseasepeople and their families, and
I'm also aware that they'regoing to be um.
(34:57):
There's different, differentcategories of where they're
likely to be um, educated, liketo be caring for them.
There'll be some that have beena more severe, there'll be some
that have been not, not assevere, and that's where I've
suggested well, how about youhave focus?
It's on the area where theywork, how about they assist in,
(35:23):
how much are they trained withit, how much are they educated?
You know, but everyone needs tohave an online access to
education in some form.
Everyone so it education in someform, uh-huh Everyone, so it's
in those areas, and I also thinkit's very important that family
(35:46):
are aware that that's been doneso they can feel better about
it too, because so many havetold me about their concerns
about the lack of education.
Yeah, like people just notknowing or never heard of the
condition yeah, yeah, I also seethat, if it can start from the
main ones, um, go through morelike teachers for the children,
(36:08):
you know, the students who go toschool, who are living with
this at home, for the teachersto have an understanding of it,
you know.
So it all flow on.
That's my, my plan, my goalexcellent.
Matt Burgess (36:24):
Well, congratulations on working um
towards that goal and thank youfor your time tonight.
Was there anything else beforewe finish up that maybe you
wanted to to say that we haven'tsort of mentioned, or do you
think we've covered most of thethings you wanted to say?
Kathy Langley (36:40):
I think we've covered much.
Just say I'm trying hard.
Matt Burgess (36:45):
Well, I think you're doing a great job and,
yeah, I'm grateful, or I'm happy, that I'm able to help in my
little way myself.
Thank you.
Yeah well, thank you for yourtime and I wish you all the best
with raising awareness aboutHuntington disease.
Kathy Langley (37:06):
No worries.
Thank you very much for havingme, and I appreciate it.
Matt Burgess (37:09):
Okay, thanks, cathy, bye, bye, bye, bye.
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