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AOSD - Adult Onset Still's disease

(8 Posts)
Stillwaters Thu 28-Apr-22 13:11:30

Hi, is there anyone in the UK who has been diagnosed with this (auto inflammatory) disease, or is trying to get a diagnosis? I'd be interested to hear of your experience.

Oopsadaisy1 Thu 28-Apr-22 13:35:30

I’m afraid I don’t, it’s quite rare isnt it?
I googled U.K. forums for you without luck, maybe you would have some luck with American ones? although they might not be much help you might find others who have similar problems.

I hope you get some feedback soon

Stillwaters Thu 28-Apr-22 20:27:34

It is rare Oopsadaisyl - and i'm having a bit of a problem getting my gp to consider it - which is why i was interested to hear whether anyone else in the UK encountered this. I'm considering asking for a private referral and paying for it out of my savings.

Aldom Thu 28-Apr-22 20:37:32

I used to be a treasurer for The Arthritis and Rheumatism Council for Research. Through this I first learned about Paediatric Stills Disease. Perhaps if you Google the above you will find useful information relating to Adult Stills Disease. I wish you well. It's a very painful illness.

Stillwaters Sat 30-Apr-22 12:30:20

Thank you Aldom
I've joined a support group, and looking at people's stories, I know that I'm lucky in that I just suffer from flares (rather than having symptoms continuously) and not too severe.
I just wondered how others in the group had fared with the NHS.

PamelaJ1 Sat 30-Apr-22 12:41:05

Keir Starmer’s mother had it.
Not a very helpful comment I’m afraid but I’ve just read that in the Times magazine. I’d never heard of it.

crazyH Tue 17-May-22 08:45:31

My son had Juvenile Arthritis/ stills disease - he has grown out of it (he is 50) but at the time it was awful. I have not heard of adult stills disease. I thought with adults it’s called Arthritis 😂

Farzanah Tue 17-May-22 09:49:51

Have you read the ‘Versus Arthritis’ site, which I use? It’s very helpful. Have you been referred to a rheumatologist? If not perhaps you should discuss this with your GP?