- Adult-onset Stills Disease
- Interviews
Shannon's interview
How did all start?
It started with a sore throat and my knees, felt like they had cramps in them all the time. About a week later, I started getting chills and fevers and the awful rash on my arms and legs. It slowly progressed so that I was bed ridden and not able to do anything, I was in and out of the hospital for over a year before they were able to diagnose me. It was a very hard time, I was 28 years old and had a 1 1/2 year old son. Once I was diagnosed, it took them over a year to finally regulate my symptoms, so that I was able to at least function from day to day.
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosised in 1989 and took over 2 years to get everything to function day to day. My wrists fused on their own due to stills so some days it is very hard to do things.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have been on Prednisone, Naproxen, Methotrexate
I am currently on Naproxen, Methotrexate, Hydroxychloroquine, Folic Acid, Pantoprazole, Vitamin D.
I am not sure, they all work for awhile, then like everything else you have to try something else, because your body is tolerating what you are taking and now you either have to up the dosage or change it.
What has been the most useful thing for you so far?
I was in remission for over 20 years which was a blessing but unfortunately stills has reared its ugly head again and I am no longer in remission. My rheumatologist has been my best friend since I started seeing her again this last year.
What have been your biggest difficulties?
Day to day. My wrists are fused, and I have a hard time cleaning and doing day to day things. I used to play the piano a lot and recently now that the mobility in my hands are getting worse, I am not able to play like I used. I am tired all the time.
How has your social and family environment reacted? Have your social or family relationships changed?
My family and best friends have been awesome. I divorced from my first husband after 19 years of marriage as he was not accepting of my limitations and expected more from me. He become physically, verbally and mentally abusive and had to get out of that situation.
What things have you stopped doing?
I find myself more of a loner and prefer now to stay home and watch a good movie or read a book. I am usually in bed by 9 the latest, but there have been times that I go to bed at 7.
What do you think about the future?
I am now 60 years old and with help from my immediate family and others with Stills disease I will be able to manage my illness better.
So far, which years have been the best years in your life? What have you done during them?
The years my children were born and being there the best I can for them, also now being there for my grandchildren. I am happy that I am able to be with them as much as I can.
What would you like to do if you didn’t have your condition?
I would have liked to be a police officer.
If you had to describe your life in a sentence, what would it be?
My parents, children and grandchildren are the best that has every happened to me.
Finally, what advice would you give to a person in a similar situation?
Get your rest, have positive people around you as much as possible. Mental health is very important.
