MY DREAD OF REVIEWS FOR THIS DISEASE

DAMON Dewitt-bukater was diagnosed with Huntington’s disease in July and has already faced two assessments for Personal Independence Payment.

Damon said: “It’s been a family curse for a long time. When I got the diagnosis my heart sank into my stomach.

There is no cure and no medication. It is just a case of watching yourself slowly deteriorate.” Ordinarily, symptoms don’t occur in Huntington’s until the mid to late 30s.

Damon, 26, of Margate, Kent, is already symptomatic. He has lost the ability to swallow, has bad short-term memory, forgets where he lives, and has poor mobility and balance.

He said: “These symptoms will get worse until I end up a shell of a person who can’t talk and can’t move.”

Damon still works as an estates manager although he doesn’t know how long he will be well enough.

He receives £220 PIP a month from the Department of Work and Pensions to help with his needs. He said: “I’ve had two assessments and they were awful. The form is 30 pages long and took me and my fiancé a week to fill out.

“I was denied benefits the first time. The person who assessed me wasn’t a clinician and said I wasn’t eligible.

“When I was assessed again I was told I’m entitled to some benefits. With the current system, I have to let the DWP know every time my condition deteriorates. They then reassess me and decide what benefits I’m entitled to.

Petrified

“I’m dreading having to call them when my condition worsens. If they send someone who doesn’t understand my condition again I’m petrified my benefits will be stopped.

“I understand people cheat the system but the Government are targeting the wrong people. To prove I’m ill and go through a reassessment every time my condition worsens is stressful and undignified.

“The questions are awful, ‘Can you wash yourself? On a scale of 1 to ten, how good are you at washing yourself?’ Things like that. And they are so repetitive. It needs to change. I live in constant fear of having to prove my illness to the Government.”