December 20, 2023 • 13 mins
Kevin Jess talks about recent papers published and about to be published concerning changing the diagnostic criteria for HD
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Episode Transcript
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(00:16):
It's time to speak up, It'stime to speak out. Welcome to We
have a Voice community discussions about Huntington'sDisease and juvenile Huntington's Disease. Show host
James Valvano, You are loved Broadcastingfrom Nova Scotia, Canada via Speaker,
(00:41):
YouTube, Spotify and other networks.This is we have a Voice radio.
My name is Kevin Jess and I'llbe your host today. I was reading
a little bit and I, uh, you know, for the show today.
It is this monologue, and soI have been doing some reading and
waiting as we all do, andI just wanted to touch on a particular
(01:06):
subject which is extremely important. Idon't think that a lot of people realize
how important changing the diagnostic criteria forHuntington's disease really is. However, there
is a paper which has been submittedwhich is called a Reconsidering Clinical Diagnostic Criteria
(01:32):
for Huntington's Disease. It's been submittedto the journal Neurology Clinical Practice and we're
hoping that it will be accepted andpublished. This is a project which started
but we have a face by JamesValvano and doctor Herbert Lang. They worked
(02:01):
on it for like unbelievable amount oftime, you know, doing a poll
which was the largest pole ever takenfor in the Huntington's community, with seven
hundred storry seven thousand, eight hundredand ninety nine saying yes to a change,
(02:23):
only just fifteen people voted no.That's available. You can see that
on our website at www dot wehave a Face dot org. This is
a project which was very near anddear too we have a Face, and
(02:45):
wouldn't have been possible at all withoutwe have a Face. You know.
There were other organizations which which eventuallyjoined in, some decided no they didn't
want to, which is you know, that's how it goes. But anyway,
(03:06):
I just wanted to talk about anotherpaper which has just been published,
which is entitled Implementing Non Motor DiagnosticCriteria. It's been published by the HSG
Neuropsychology Working Group in October twenty twentythree. So anyway, I guess it's
(03:37):
implementing I'm sorry, implementing non MotorDiagnostic Criteria. The title I guess is
it's by the HSG Neuropsychology Working GroupPosition on Best Practice Recommendations for the Clinical
Neuropsychological evaluation of patients with HD byConsetting and others. So I was,
(04:01):
I was reading, I was readingit, and basically it it's you know,
the objective was uh, you knowsaying neuropsychological evaluation is critical due to
detection and management of cognitive and neuropsychiatricchanges associated with Huntington's disease. Accurate assessment
(04:25):
of non motor complications of HD iscritical given the prominent impact on functional disability,
frequently commensurate with or exceeding that ofmotor symptoms. So it's it's really
the first time you know that somethingis has been put forward that actually recognizes
the need for professionals to uh,you know, to diagnose someone with HD
(04:56):
if even if motor symptoms are absent. Now, this is incredibly important in
the HD community because many people can'tget resources without an actual diagnosis. So
you may comme in, say witha CG of forty five, but if
(05:19):
you don't have movement, you maynot get a diagnosis of Huntington's disease.
So you can imagine if someone youknow, they're they're they are having psychological
issues and so on, it makesit difficult they maybe they can't work,
they can't, so they would notbe able to get that disability pension.
(05:40):
They wouldn't be able to get thesethings because they don't have a diagnosis due
to the fact that they don't havemovement. You know, I've said this
before, but you know, it'slike telling a woman that she won't They
won't tell a woman that she's pregnantunless she's showing a belly. It's just
(06:05):
simply wrong. However, it lookslike due to that work that was done
originally by James Slovano and doctor HerbertLang, that people are starting to listen.
Now. There is another paper thatis mentioned in this particular paper,
(06:32):
and it basically says that the neuroPsychology Working Group or the NPWG. It
says a companion paper operationalizing clinical applicationof the previous research based non Motor Diagnostic
(06:54):
Criteria or H for HD is forthcoming, which also advises on the non motor
symptoms screening methods for the non neuropsychologistworking with HD. What that's talking about
is the paper that was originally doneby We have a Face. It's it's
(07:16):
undergone some changes. Some changes aredisappointing, uh to we have a Face,
but it's a good step forward.The changes were made basically I can
see for political reasons, uh,for to satisfy some people on our one
(07:41):
person I would say, on onthe in the working group, and which
has to do with some CAG numbers. This was very disappointing to us.
However, from what I understand,uh, this not be avoided. They
just wanted to have somebody's signature onit to say, you know, they
(08:09):
were part of it. I knowthat sounds rather childish, because it really
is. However, sometimes you haveto compromise in order to get a step
forward, and I think that that'swhat has happened here. That's what's happened.
And hopefully though that paper will bepublished shortly, I'm kind of thinking
(08:39):
it will be, but you know, you just never know. But this
one here, the one that Ijust read a little bit of it,
it actually would start that ball rollingand allow for this other paper to commit.
So I'm very hopeful. I thinkthat this will prompt changes in the
(09:05):
Huntington's community. For I'm talking aboutthe professional part of the community, so
that they start looking at what theycall the softer symptoms, you know,
the non motor symptoms. So ifyou don't have movement that they would look
at that and say, yeah,okay, well they have a keg of
(09:26):
such a such a number, andthey are having these particular symptoms that are
you know, psychological or or otherwisejust non motor, and they match with
Huntington's disease, and the keg issuch and such. Therefore, yes,
we can give them a diagnosis forHuntington's disease. I think that that.
(09:50):
Yeah, no, nobody wants ayou know, to have Huntington's disease,
but it is a positive step becauseit will allow for people to get resources
that they they normally wouldn't be ableto get. So this is, you
know, we're waiting, and inthe Huntington's community is always a wait.
(10:11):
However, if implemented, it reallywould be the most significant change that the
Huntington's community has seen since the discoveryof the gene in nineteen ninety three.
That's how significant that is. I'mthinking that I'm trying to make this as
(10:33):
understandable as possible because I'm a layman, just like you. I don't understand
all these intricacies and these big wordsand what have you. A lot of
us start learning some of these wordsas we go through the process of Huntington's
disease with whether we have it orwhether or you know, our caregivers.
(10:54):
I was a caregiver, and soI did learn a lot during that time.
Uh I'm no longer a caregiver,but nevertheless I still try and keep
up with the terminology and what's goingon. And I also, you know,
(11:16):
I have chatchy BT, which helpsme a lot because I can put
a study in and say can youput this in Lehman's terms, and and
it will, it will explain itto me. There's nothing to be I
guess there's nothing to be ashamed ofif you don't understand. We didn't go
to university ran so to to learnthis to be some medical professional. But
(11:37):
I thought I'd reach out to youand just to let you know and give
you the heads up that that youknow, after all these years of of
you know, really pounding away atthis particular issue of the diagnostic criteria,
(11:58):
which a lot of people just didn'tunderstand. But nevertheless it was a necessary
thing to do. But after allthese years, just finally see something taking
shape that even though some people didn'tlike it, there were those that were
hearing it, and they realized whenthey saw the polls results that the Huntington's
(12:20):
community were demanding a change. Okay, And because we have a FACE is
a patient patient advocacy organization, sowe advocate for the patient. We do
not advocate for the companies that aremaking drugs or what have you. We
(12:43):
advocate for the patient. And Ijust wanted to let you know that maybe
some of that work is paying off. So I'll bid you ADO for the
evening, and I just want tolet you know, as always, you are loved
It's time to speak up, It'stime to speak out. Welcome to We
have a Voice community discussions about Huntington'sDisease and juvenile Huntington's Disease. Show host
James Valvano, You are loved Broadcastingfrom Nova Scotia, Canada via Speaker,
(00:41):
YouTube, Spotify and other networks.This is we have a Voice radio.
My name is Kevin Jess and I'llbe your host today. I was reading
a little bit and I, uh, you know, for the show today.
It is this monologue, and soI have been doing some reading and
waiting as we all do, andI just wanted to touch on a particular
(01:06):
subject which is extremely important. Idon't think that a lot of people realize
how important changing the diagnostic criteria forHuntington's disease really is. However, there
is a paper which has been submittedwhich is called a Reconsidering Clinical Diagnostic Criteria
(01:32):
for Huntington's Disease. It's been submittedto the journal Neurology Clinical Practice and we're
hoping that it will be accepted andpublished. This is a project which started
but we have a face by JamesValvano and doctor Herbert Lang. They worked
(02:01):
on it for like unbelievable amount oftime, you know, doing a poll
which was the largest pole ever takenfor in the Huntington's community, with seven
hundred storry seven thousand, eight hundredand ninety nine saying yes to a change,
(02:23):
only just fifteen people voted no.That's available. You can see that
on our website at www dot wehave a Face dot org. This is
a project which was very near anddear too we have a Face, and
(02:45):
wouldn't have been possible at all withoutwe have a Face. You know.
There were other organizations which which eventuallyjoined in, some decided no they didn't
want to, which is you know, that's how it goes. But anyway,
(03:06):
I just wanted to talk about anotherpaper which has just been published,
which is entitled Implementing Non Motor DiagnosticCriteria. It's been published by the HSG
Neuropsychology Working Group in October twenty twentythree. So anyway, I guess it's
(03:37):
implementing I'm sorry, implementing non MotorDiagnostic Criteria. The title I guess is
it's by the HSG Neuropsychology Working GroupPosition on Best Practice Recommendations for the Clinical
Neuropsychological evaluation of patients with HD byConsetting and others. So I was,
(04:01):
I was reading, I was readingit, and basically it it's you know,
the objective was uh, you knowsaying neuropsychological evaluation is critical due to
detection and management of cognitive and neuropsychiatricchanges associated with Huntington's disease. Accurate assessment
(04:25):
of non motor complications of HD iscritical given the prominent impact on functional disability,
frequently commensurate with or exceeding that ofmotor symptoms. So it's it's really
the first time you know that somethingis has been put forward that actually recognizes
the need for professionals to uh,you know, to diagnose someone with HD
(04:56):
if even if motor symptoms are absent. Now, this is incredibly important in
the HD community because many people can'tget resources without an actual diagnosis. So
you may comme in, say witha CG of forty five, but if
(05:19):
you don't have movement, you maynot get a diagnosis of Huntington's disease.
So you can imagine if someone youknow, they're they're they are having psychological
issues and so on, it makesit difficult they maybe they can't work,
they can't, so they would notbe able to get that disability pension.
(05:40):
They wouldn't be able to get thesethings because they don't have a diagnosis due
to the fact that they don't havemovement. You know, I've said this
before, but you know, it'slike telling a woman that she won't They
won't tell a woman that she's pregnantunless she's showing a belly. It's just
(06:05):
simply wrong. However, it lookslike due to that work that was done
originally by James Slovano and doctor HerbertLang, that people are starting to listen.
Now. There is another paper thatis mentioned in this particular paper,
(06:32):
and it basically says that the neuroPsychology Working Group or the NPWG. It
says a companion paper operationalizing clinical applicationof the previous research based non Motor Diagnostic
(06:54):
Criteria or H for HD is forthcoming, which also advises on the non motor
symptoms screening methods for the non neuropsychologistworking with HD. What that's talking about
is the paper that was originally doneby We have a Face. It's it's
(07:16):
undergone some changes. Some changes aredisappointing, uh to we have a Face,
but it's a good step forward.The changes were made basically I can
see for political reasons, uh,for to satisfy some people on our one
(07:41):
person I would say, on onthe in the working group, and which
has to do with some CAG numbers. This was very disappointing to us.
However, from what I understand,uh, this not be avoided. They
just wanted to have somebody's signature onit to say, you know, they
(08:09):
were part of it. I knowthat sounds rather childish, because it really
is. However, sometimes you haveto compromise in order to get a step
forward, and I think that that'swhat has happened here. That's what's happened.
And hopefully though that paper will bepublished shortly, I'm kind of thinking
(08:39):
it will be, but you know, you just never know. But this
one here, the one that Ijust read a little bit of it,
it actually would start that ball rollingand allow for this other paper to commit.
So I'm very hopeful. I thinkthat this will prompt changes in the
(09:05):
Huntington's community. For I'm talking aboutthe professional part of the community, so
that they start looking at what theycall the softer symptoms, you know,
the non motor symptoms. So ifyou don't have movement that they would look
at that and say, yeah,okay, well they have a keg of
(09:26):
such a such a number, andthey are having these particular symptoms that are
you know, psychological or or otherwisejust non motor, and they match with
Huntington's disease, and the keg issuch and such. Therefore, yes,
we can give them a diagnosis forHuntington's disease. I think that that.
(09:50):
Yeah, no, nobody wants ayou know, to have Huntington's disease,
but it is a positive step becauseit will allow for people to get resources
that they they normally wouldn't be ableto get. So this is, you
know, we're waiting, and inthe Huntington's community is always a wait.
(10:11):
However, if implemented, it reallywould be the most significant change that the
Huntington's community has seen since the discoveryof the gene in nineteen ninety three.
That's how significant that is. I'mthinking that I'm trying to make this as
(10:33):
understandable as possible because I'm a layman, just like you. I don't understand
all these intricacies and these big wordsand what have you. A lot of
us start learning some of these wordsas we go through the process of Huntington's
disease with whether we have it orwhether or you know, our caregivers.
(10:54):
I was a caregiver, and soI did learn a lot during that time.
Uh I'm no longer a caregiver,but nevertheless I still try and keep
up with the terminology and what's goingon. And I also, you know,
(11:16):
I have chatchy BT, which helpsme a lot because I can put
a study in and say can youput this in Lehman's terms, and and
it will, it will explain itto me. There's nothing to be I
guess there's nothing to be ashamed ofif you don't understand. We didn't go
to university ran so to to learnthis to be some medical professional. But
(11:37):
I thought I'd reach out to youand just to let you know and give
you the heads up that that youknow, after all these years of of
you know, really pounding away atthis particular issue of the diagnostic criteria,
(11:58):
which a lot of people just didn'tunderstand. But nevertheless it was a necessary
thing to do. But after allthese years, just finally see something taking
shape that even though some people didn'tlike it, there were those that were
hearing it, and they realized whenthey saw the polls results that the Huntington's
(12:20):
community were demanding a change. Okay, And because we have a FACE is
a patient patient advocacy organization, sowe advocate for the patient. We do
not advocate for the companies that aremaking drugs or what have you. We
(12:43):
advocate for the patient. And Ijust wanted to let you know that maybe
some of that work is paying off. So I'll bid you ADO for the
evening, and I just want tolet you know, as always, you are loved
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