Daughter diagnosed with adult onset stills disease,ag... - NRAS
Daughter diagnosed with adult onset stills disease,age 18,struggling to find others .any one here can help us ?
there is a programme on the satelite channel Home & Health [sky 240] called "Mystery Diagnosis".
just last week they featured a young man with AOS.
these programmes are shown several times, I think it was titled "rash decisision"
oops it was Mystery ER same channel.
Rash Decision/Inflamed (2008) (TV Episode)
- Mystery ER (2007) (TV Series)
Plot Summary for
"Mystery ER" Rash Decision/Inflamed (2008)
"RASH DECISION" A.K.A."IRRATIONAL SYNDROME" In 2006 an otherwise healthy college student comes down with a purple rash that literally spreads before his eyes. After a series of ER visits, the doctor narrows it down to one of eight possible diseases. As the college student's health deteriorates the doctor must find the cause of the rash before time runs out
Many thanks for this. I will watch.the disease is very rare but manifest like RA. I want to help and support my daughter in the right way.some of the stuff out there is quite scary!
Can't help but thinking off you both x
There was a fairly long article on Adult Stills by Dr Joel David in the NRAS magazine last year. It may help you as it describes the case of a student who suffered this rare form of the disease - worth googling this rheumatologist's name with NRAS I think as I suggested this a while back to someone with Stills and they found it really helpful to read. Tilda x
I will.my daughter is now on 25 mg methatrexate inj,anakinra daily,15mg steroid plus others.but so positive and bright!
If she's on Facebook, I think there are some groups on there. I'm in some autoimmune groups and have chatted with some Stills folk there.
Also Arthritis Care Living with Arthritis forum have a few people with Stills. Tilda x
Thanks for all the help. Unable to find when the mystery illness is on sky and will look at facebook.daughter found stills life ...but laura sadly died in December.really need positive posts and would be good if other young people with similar illness could chat with her
Many thanks to you all
Hi Enaid, I was diagnosed with RA when I was 21, am 24 now. I don't know very much about Still's, but if your daughter wants to talk or has any questions, she's more than welcome to message me. Am on MTX as well, and am relatively pain free now. Tracy 
Hi Tracey .i am sorry to hear you have ra but happy it is being controlled! I have shown your response and my daughter is going to message you.thankyou for offering to talk to her
X
