I have been diagnose with 22q11 deletion syndrome

Hello John,

I have no experience of helping someone with the condition you mention in your post, but hopefully some of our members can help out on this one.

What I would say is that a PIP award is based on how the condition effects you, not on what the condtion is.

Catherine

Hello John

I haven't been able to find any posts where members have mentioned DiGeorge syndrome (22q11 deletion), so I can't tell you whether we have anyone who has successfully claimed PIP. However, as Catherine said in her post PIP is awarded on how the edition affects you, not on the condition itself. There are a lot of different symptoms related to the syndrome as you know, but it varies from one person to another how many of them a person has and the severity of those symptoms. But it is quite possible that a claimant would find difficulties with many of the specific PIP criteria laid down.

If you haven't already applied (if you're asking for yourself) - one thing I will say, is that you will have to be very clear about the difficulties you have only because it is not a well-known condition and if you don't spell it out to them, someone reading it will make all sorts of assumptions. Of course, you know your condition but I would also tick off against the checklist from the NHS website so you don't forget anything that affects you. www.nhs.uk/conditions/digeorge-syndrome/

BIS

Hi John,
Like others on the forum I had never heard of Digeorge Syndrome, or 22q11 deletion. The NHS website will no doubt help, but maybe have a look here too:
www.maxappeal.org.uk/
As BIS PIP awards are made on the basis of points scored as a result of limited function and you will have to explain this clearly to avoid the erroneous assumptions that BIS mentions. When I have represented claimants with lesser known conditions, I will include an information leaflet from specialist association or Internet to give some more understanding to the assessor. Comparisons with other more known conditions might also be useful, if these are known.
I do hope that you will claim PIP.There is no reason why you should be able to receive this, if you struggle with various daily living and or mobility activities.
Good luck.
LL26

Hi JH

Like other Mods on this forum, I have not heard of 22q11 deletion Syndrome and I bet assessors also have not heard of it.

If it is possible you may want to send a information sheet on 22q11 deletion Syndrome and the effects it can have on those with the condition.

From your post I don't know if you are applying for PIP or have applied for PIP, if it is the former then send what information you have along with other supporting documents.

Gary