DLA & rare conditions

I was born with 2 rare conditions. One of which was discovered earlier this year when I was being tested for something else.

One of the conditions, is extremely rare and there is nothing I can find in the DHB about it. (the care & mobility needs, that is)

Do I really need to send in information about it? I am thinking about doing so; but am not too sure yet.

I am only thinking of doing it to back up my claim about some of the issues I have. (I have been told many times I shouldn't have those issues)

If it rare then its worth sending them any info you have and also worth aiming them in the direction where they can do there own homework, they wont take all you say as gosple so if it has a group helpline or you know of a hospital that runs clinics for the problem even if you dont go, give them the info

Sofie wrote:

I was born with 2 rare conditions. One of which was discovered earlier this year when I was being tested for something else.

One of the conditions, is extremely rare and there is nothing I can find in the DHB about it. (the care & mobility needs, that is)

Do I really need to send in information about it? I am thinking about doing so; but am not too sure yet.

I am only thinking of doing it to back up my claim about some of the issues I have. (I have been told many times I shouldn't have those issues)

Hi Sofie,

The Disability Handbook (DHB) is gradually being phased out, since it was last updated in 1998. DWP Decision Makers & DLA Tribunals now tend to use A-Z of Medical Conditions

However, do bear in mind that for DLA, the name of the condition is secondary, what is paramount is the level of care and/or mobility needs that you have.

Good luck.

Pat