Hi all. My partner who is 24 has AMN after being diagnosed 2 years ago. He has finally had to stop work has it was getting a struggle working on a building site. Does anyone in england know what benefits he would be entitled to, while he's not working??

Hi there, I was diagnosed back in Jan '09 aged 34. My sister, who is asymptomatic discovered that I was eligible for Disability Living Allowance (DLA) here in the U.K. (I live in Worcestershire). Basically anybody in the U.K. with symptomatic AMN is eligible for DLA it just depends on how restricted your mobility is as to how much money you will receive, it is broken down into two components and both are assessment led. The problem is that at the moment this system is in the process of being replaced by the new Personal Independence Payment (PIP). I say problem because the government has been very ambiguous about the whole situation and what it means for us and other people that are living within the spectrum of disability. As far as any other governmental help goes you can apply for cost free modifications to your home - say bathroom hand rails and that kind of thing. Application for a drivers Blue Badge is handled by your local council - again you shouldn't have any problems getting one of these. If your partner is eventually awarded the higher rate of the DLA mobility component you will be eligible for a new car through the car Mobility scheme. I hope this has helped you out, if there is anything else I can help you with I can give you my Email address. Cheers, Matt

In England you can start getting in touch with ALD Life http://www.aldlife.org/wp-content/uploads/2014/08/Optimal-Rehab-Physiotherapy-Exercise.pdf http://www.aldlife.org/wp-content/uploads/2014/08/Contact-a-Family-Benefits-are-Changing.pdf http://www.aldlife.org/wp-content/uploads/2014/08/Bluebird-Bio-Gene-Therapy-for-Adrenoleukodystrophy.pdf http://www.aldlife.org/wp-content/uploads/2014/08/Florian-Eichler-How-can-we-eradicate-Adrenoleukodystrophy-together.pdf Ciao, Valentina

Hi, Thanks very much for finding the time to reply back. If its not a problem, would i be able to aks for your email adress just in case we might need help with anything else in the future. Thanks a lot. All the best.

Anything to help, my Email is heyhupla@gmail.com. Now that It's been nearly six years into my diagnosis I've got a clearer insight into what the NHS/DWP can provide us with (it's been a learning curve!!) and hopefully I can help you obtain the care/benefits you're entitled to. Cheers, Matt

Hi Matt. Thanks a lot for your email and thanks for your help. Greatly appreciated! Take care Nicole.

Hello, This is my second attempt to get into a forum. After 3 years of trying to find what was wrong with my body I was finally diagnosed at the Mayo clinic in April of 2013. I'm simply looking for someone to talk to that is going through the same thing. Any responses are appreciated.