Petition on Huntington's Disease - Bit Long-Winded but Please Read

[A Century United]

As some of you will already know, my wife suffers from Huntington's Disease. This is an inherited genetic condition with symptoms generally appearing in early middle age, though a proportion of sufferers get Juvenile Huntington's. It is one of the worst genetic conditions to get, and has been described as a combination of Parkinson's, Alzheimer's and Motor Neurone disease. My wife already has major balance and swallowing problems, and worsening psychiatric symptoms. There is not only no cure, there are almost no specific treatments for the symptoms, and life expectancy is usually 15 - 20 years from onset.

I have already had superb support from this board for the Fire Walk I did a while ago to raise funds for the Scottish Huntington's Association, and I would be very grateful for some more support now.

The Government are changing the rules for benefits, and at the moment this means that People with Huntington's Disease (Phd's) will have to completely reapply for their disability benefit and possibly have to go to ATOS for a Medical to see if they are fit for work. I know that the whole subject of benefits is an emotive one, but Phd's and their carers are going to find this whole unnecessary process distressing and very difficult to negotiate. Some diseases have been singled out by the Government for a "streamlined" application process, and this E-Petition is to ask the Government to consider adding Huntington's to that list:

Huntington’s disease - Recognised and considered appropriately for benefits.

Responsible department: Department for Work and Pensions


With the call by Cheryl Gillan for claimants with Autism to be treated differently under the work capability assessment tests, we call for those claiming for Huntington’s disease (HD) to also be granted special treatment ‘so that it is fair and appropriate for claimants’.


HD is an inherited brain disease for which there is no cure. Classed as ‘rare’, the lack of informed medical knowledge about HD can lead to misunderstanding of its likely progression. Those diagnosed currently have a life expectancy of below 20 years from symptom onset.


The government previously singled out HD in the case of insurance. Having already decided positive testing means a life is of limited time scale, we urge the government to recognise the need to streamline the benefits process for those suffering and their carers.

If you can find the time I would be grateful for any signatures for this - Thank You.

Sign Here

 

[WightShrimper]

Done mate, and good luck to you both.

 

[OldBlueLady]

Done Tom, with best wishes.

 

[MK Shrimper]

And done mate. Good luck.

 

[Tommy2holes]

Done and good luck

 

[Crabby Shrimper]

Signed.

We lost a good friend of the family through Huntingdons, and the mother of my ex boss is also a sufferer. A really horrible disease.

 

[londonblue]

Done.

My brother's mother-in-law died from this horrible disease. From what I understand this is a disease that is passed down the female line, meaning there is a 25% chance my brother's wife will contract it, and the same goes for both his daughters.

 

[A Century United]

Done.

My brother's mother-in-law died from this horrible disease. From what I understand this is a disease that is passed down the female line, meaning there is a 25% chance my brother's wife will contract it, and the same goes for both his daughters.

Thanks, londonblue.

I'm really sorry to hear about your sister-in-law. Unfortunately, Huntington's doesn't discriminate like Haemophilia and is passed on to either sex so the chance of any child inheriting it from one affected parent is 50%. The risk for any of your sister-in-law's children is 25% at the moment but if she should have Huntington's that then rises to 50%.

Lots of information at:

Huntington's Disease Association - Fact sheets, Support groups, Message Board, Links

HD Buzz Clear information and updates about Huntington's.

Happy to answer any questions here or by PM.

 

[Tangled up in Blue]

e-petition signed.

Good luck Tom.

 

[A Century United]

Thanks to everyone who has signed, it's very encouraging to see the total climibing fast again. :thumbsup:

The husband of the lady who has started this petition died of HD -here is a link to her blog, an interesting read (as is her book)

Curse in Verse​

 

[dloman]

Signed and completed, best of luck with it all.

 

[Benfleet A1]

Done and done.

 

[Massimo Giovanni]

Souithend Huntingdon disease society are a really nice bunch, often have quizzes and cake mornings stuff at the Echo club.
Awful disease and a cure must be found.

 

[A Century United]

Souithend Huntingdon disease society are a really nice bunch, often have quizzes and cake mornings stuff at the Echo club.
Awful disease and a cure must be found.

They are a very progressive support group, they also work with Leigh Horticultural Society, and have allotments where Phd's and their carer's can work and spend time. Recently one of the top HD workers from the States (Jimmy Pollard) was sharing a video about the Southend group's work on the HuntDis message board - they've gone global! :smile:

 

[MK Shrimper]

...and done again from my work account :winking:

 

[A Century United]

...and done again from my work account :winking:

You'll have to wait for your green but never fear..... :smile: