both my sons age 11 and 2 1/2 have CMT TYPE 1A also as does me keep being advised to claim DLA as all of us suffer on a daily basis ..

[SPLITZSPLITZ]

heard bad stories of people that have applied for DLA ..my mum being one of them ..TURNED DOWN and didnt appeal but now at 72 can hardly walk any distance as legs just give way so relies on family/lifts to get her out ?? as not safe to go out on own .do i apply for DLA for all 3 of us as it effects us all now and i am mum/carer ??

[CMTUnitedKindom Partner]

Yes, give it a go, before the DLA morphs into Personal Independence Payments - which wouldn't affect your sons, but would affect you!

It is a bit of a nightmare but give it your best shot. Just remember to stress how you all are on your WORST possible days - and you never admit to having good days!

Check out benefitsandwork.co.uk for lots of resources to help you complete the forms . You can log in with our details - username cmt and the password is frame2

Good luck

Karen

[curlyburli]

Everyone I know has failed the DLA first time, I was one of them. I waited and reapplied, had a doctor assess me and was accepted.

I think even the new PIP will be the same. My advice is get advice from every source you can before filling out the forms, I did. I had a fellow sufferer and a local disability advisory centre help me to fill one out. Do brain storming, write everything down I MEAN everything, wirte with a pencil on a piece of A4. Ask friends and family for their opinion how it affects you all.

[John1945]

Hello to SPLITZSPLITZ ....So sorry to that both your sons have "inherited"-(passed from a parent to offspring) : Have you received a written confirmation from your NEUROLGIST, stating that you all have Charcot Maire Tooth Disease : Normally blood tests would be taken and sent to a specialist laboratory for anylysis : Also Electromyography (E.M.G.) testing, would measure the speed of your nerves impulses-(signals, to and from the brain to muscles) :

Yes you can claim Disability Living Allowance : However it stops on soon : It is being replaced from 8 April 2013, by the NEW Personal Independence Payment (PIP) will replace Disability Living Allowance (DLA) for people aged 16 to 64 with a health condition or disability :

We all await the new P.I.P. claim form with much interest ? As the D.L.A. claim form was a "nightmare", and contained, an unbelievable 39 pages to be filled in !

If a person is offically diagnosed with Charcot Mairie Tooth Disease you DO NOT have an automatic entitlement to D.L.A. : You must prove that you need regular help for your own 'PERSONAL NEEDS' such as, washing/dressing/cooking/travelling/management etc : You can ask for help for getting around by claiming the 'MOTABILITY' component : I suspect that you have left your claim for D.L.A. to late

When you decide to make a claim for benefits, seek assistance from the Citizens Advice Bureau,or from your local Councils Benefits Officer :

Best of luck to you and your family, remember that you are 'NOT ALONE' , as there are approx 23,000 C.M.T. suffers in the UL ?

John .... (Glasgow)

[Barry52]

The good old Tory party don't believe in disabilities,hence Mr Duncan Smiths move to get people off DLA/PIP his mentality is IF YOU CAN BREATH YOU CAN WORK