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

A Century United

Firewalking for HD
Joined
Jan 26, 2007
Messages
10,003
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
 
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