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Old 23-05-11, 10:11 PM   #41
just1moreperson
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Default Re: Do you know an unrelated person with HD in their family?

Quote:
Originally Posted by Trish View Post
I would challenge the APPG's being able to present 'a good idea'. Secrecy in HD families will always alter the real picture. If families don't know about it in their own homes etc how on earth would outsiders? I'd love to know more about the way the 'experts' are looking into prevalence.
Well I did say that the secrecy will probably mean the figure isn't high enough. But still, the research will give us a better idea than we currently have. I'm not sure how they are conducting it, I guess we will find out soon enough. I think it's out in the summer.

As far as I can remember the government has a really low figure in their records for HD, something like 4,000 people in the country. But HDA has around 7-8,000 on their records (as far as my memory recalls), so just from that we know the figures are wrong.

The study will be interesting and should help us back our cause in politics (and get more cash!)
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Old 23-05-11, 10:25 PM   #42
hdauk
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Default Re: Do you know an unrelated person with HD in their family?

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No one is suggesting it is comparable to Cancer or the others you mention Matt.

However, my point is that HD is more prevalent than it has traditionally been made out to be.

I would challenge the APPG's being able to present 'a good idea'. Secrecy in HD families will always alter the real picture. If families don't know about it in their own homes etc how on earth would outsiders? I'd love to know more about the way the 'experts' are looking into prevalence.
Hi All

Actually the prevalence study, funded by the HDA is quite exciting, because it looks at GP relation to chorea and on tetrabenazine - there is a lot of raw data analysis to be done, but initial info looks quite exciting. Results will be Autumn time though.

Lets stick together and hope that the data confirms, what we all think, that HD is more common than everyone thinks...

Cath
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Old 23-05-11, 11:32 PM   #43
Trish
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Default Re: Do you know an unrelated person with HD in their family?

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Originally Posted by hdauk View Post
Hi All

Actually the prevalence study, funded by the HDA is quite exciting, because it looks at GP relation to chorea and on tetrabenazine - there is a lot of raw data analysis to be done, but initial info looks quite exciting. Results will be Autumn time though.

Lets stick together and hope that the data confirms, what we all think, that HD is more common than everyone thinks...

Cath
Thanks Cath

To be honest I'm even more confused now as that suggests they are looking at post symptomatic (chorea) and diagnosed (TetraB if prescribed) data as opposed to pre-symptomatic and undiagnosed which is surely where the fuller picture expands to? A 'better' idea' rather than a 'good idea' is maybe where I was heading. That said... I look forward to seeing the figures looking more strongly represented than at present.
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Old 12-09-14, 06:52 AM   #44
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Default Re: Do you know an unrelated person with HD in their family?

Hi All,
I work with a woman whoes father was one of 8 , 5 of whom had/ have HD.

We also had the suicide of the chap with HD just a few minutes walk from our house whom we thought was a first cousin of Roger but it turned out, was not
( thanks to Allans detective work).
That poor chap did share the same surname as Rogers mums maiden name, so there may be a distant connection but no link made yet.

So yes, HD does appear to be more prevalent than statistics would have us believe.

Have nice weekends everybody, whatever you are up to,

Brenda
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Old 12-09-14, 11:59 AM   #45
Allan
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Default Re: Do you know an unrelated person with HD in their family?

Hi everyone

Many mish-mash apologies for this apparent hotch-potch of stuff. What appears below has been seen in various threads since 2010 and is probably the finest example of stuff getting lost - or forgotten [politically] - or placed on the back burner - or binned. Here goes:

19th January 2011: APPG What is happening?

Hi All

The Association has been in contact with members of the APPG - highlighting issues such as unequal access to care, the difficulites that some of the government reforms will create for people with HD, the need for access to specialist clinics. We have also commissioned an comprehensive research study to look at prevelence. Future plans include delivering the banner you all signed to number 10, getting our care pathway published and encouraging the APPG to cite it as what care for people with HD should have access to. once the research study is complete we hope to have a media launch, and present to the APPG.

That's the update!

Cath



23rd May 2011: Do you know an unrelated person with HD in their family?

Originally Posted by Trish
I would challenge the APPG's being able to present 'a good idea'. Secrecy in HD families will always alter the real picture. If families don't know about it in their own homes etc how on earth would outsiders? I'd love to know more about the way the 'experts' are looking into prevalence.

Hi All

Actually the prevalence study, funded by the HDA is quite exciting, because it looks at GP relation to chorea and on tetrabenazine - there is a lot of raw data analysis to be done, but initial info looks quite exciting. Results will be Autumn time though.

Lets stick together and hope that the data confirms, what we all think, that HD is more common than everyone thinks...

Cath [HDAUK Moderator]



5th September 2014: The Political Bandaid - or is it?

Hi all

After reading this thread, I wanted to give a brief update on the APPG:
In 2013 the HDA took over the secretariat of the group, this basically means that we organise the meetings and strive to keep the group running.

Ruth [HDA Moderator]



I have been at it until the early hours again – trawling and searching through the hotch-potch of stuff related to recent postings [not just in this thread]. As well as becoming sidetracked and enthralled by the openness and sincerity when reading most of the posts from way back when [2008-12], I was angered, as now, by the lack of cohesion of the HDA website and the dearth of news\knowledge\info that was just by-passing the website. So, although it was different people, in the main, the determined thoughts and passionate posts were just the same as the current issues.

It seems to me that the APPG accepted this study below as their “raison d’être” in 2012 and have failed to produce anything else of note since:

Prevalence of adult Huntington’s disease in the UK based on diagnoses recorded in general practice records” can be read here: http://researchonline.lshtm.ac.uk/68...012-304636.pdf

Other similar stuff:

http://currents.plos.org/hd/article/...-meta-analysis

http://www.cmmt.ubc.ca/research/dise.../HD_Prevalence

http://www.ncbi.nlm.nih.gov/pmc/arti...00493-0047.pdf

http://www.nature.com/ejhg/journal/v...hg2010229a.pdf
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Old 12-09-14, 11:36 PM   #46
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Default Re: Do you know an unrelated person with HD in their family?

There's a guy at my work with a sister with HD, my wife's best friend has an uncle with HD, even the mental health nurse on the ward has a relative with HD...it's so much more prevalent than officially published or somehow I have a network of over 30,000 people I know...when actually i have a social life of zero.
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Old 14-09-14, 08:52 PM   #47
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Default Re: Do you know an unrelated person with HD in their family?

Hi

I think the prevalence figures are way off and there will never be an accurate record. For many years papers have been written about prevalence and figures and statistics recorded and analysed for why; to plan for and provide services? Yet as can be seen by so many posts on the board the services are often woefully inadequate with little appropriate care and support.

Families have kept Huntington's disease secret for generations George Huntington's paper On Chorea published in 1872 noted

' The hereditary chorea, as I shall call it, is confined to certain and fortunately a few families, and has been transmitted to them, an heirloom from generations away back in the dim past. It is spoken of by those in whose veins the seeds of the disease are known to exist, with a kind of horror, and not at all alluded to except through dire necessity, when it is mentioned as "that disorder."

For some families keeping it secret has been a successful strategy if no children inherit the gene then no one needed to know it even I believe led to splits in families as those who were clear of HD avoided members of extended family who may have been affected .

Reasons for this secrecy are complex and perhaps somewhat surprising than even in the 21st Century when so much is shared on Facebook twitter etc etc that still many keep this disease secret .

The genetic nature of course can make it difficult to be open as if one part of the family talks about it this automatically 'outs' the risk of other family members . People are afraid re insurance , employment , relationships etc etc etc so again for many keeping HD hidden is a strategy to protect their own and their families security and again if no one inherits the gene then keeping it secret has been worthwhile .

However a person does begin to show symptoms physical or psychiatric then hiding becomes less of an option but again as has been seen on many posts here families can be divided as lack of understanding from friends and family is often experienced and professional help is hit and miss depending on post codes etc .

I cannot think of another disease that has this level of secrecy in the beginning of the Aids epidemic those who were HIV positive were stigmatised by some in society and others ostracised by their family but they soon acted as a community leading to huge awareness campaigns. fundraising and the introduction of therapies but unlike HD Aids for the most part affected one family member not many and did not have the cognitive , psychiatric symptoms of HD or the movement disorder and chorea which can be perceived as frightening and aggressive see article attached

http://www.dailymail.co.uk/news/arti...ocial-facebook

With disease such as Parkinson’s, MS, MND again it is for the most part one member of the family who is affected and I am not sure there is the denial / lack of awareness in these diseases in the same way that there is with HD and which causes problems accessing support .

The Pie in the Face challenge has been interesting as lots of people have posted their videos on social media , YouTube etc perhaps challenging the secrecy.

But back to prevalence I think it will be almost impossible to get accurate figures anytime soon and perhaps resources and research may be used in future challenging the stigma, prejudice and discrimination those with HD face in society , the lack of awareness of HD in the wider public sphere and the disparity in care for those suffering etc and in turn small successes in each of theses areas would hopefully have a positive effect on other areas . So instead of statistic perhaps we might concentrate on challenging the stigma , the stress , the heartbreak , the loss ,the struggle that we each face every day whether caring for someone , living at risk or living with the disease .

Jaq x
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Old 14-09-14, 09:37 PM   #48
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Default Re: Do you know an unrelated person with HD in their family?

Such a perceptive and accurate posting..... thank you....anyone who has responsibility for decisions relating to funding, insurance, care and support etc should be made to read it.
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