- Adult-onset Stills Disease
- Interviews
Justme919's interview
How did all start?
Just a slight stiffness in my pointer finger, then I felt like I had the flu. Fatigue, mild fever, sore throat. I also started having anxiety/panic attacks for no reason-something I never had. Then the rash came, and these crazy high fevers, between 101 and 105. All this in the course of about 2-3 months.
Do you already have a diagnosis? How long did it take you to get it?
At that time (2011) I was living in Greece. I admitted myself to the clinic when the fever became unbearable. They ran many tests on me, but could not diagnose me. I returned to the USA, where the arthritis set in and was diagnosed with AOSD in September
What have been your biggest difficulties?
The biggest difficulty in all honesty has been dealing with family/friends etc. who cannot understand a disease that cannot be seen. Unless I am flat and cannot move-they see nothing wrong.
How has your social and family environment reacted? Have your social or family relationships changed?
If Its not enough having to deal with this shit disease, the fatigue, pain but to have to deal with lousy family members and no support is even worse than the Stills!
What things have you stopped doing?
I have permanent knee damage, get fatigued so fast. I cannot "run" like I used to. Its hard trying to keep up with my daughter
What do you think about the future?
One day at a time. This will not beat me.
What would you like to do if you didn’t have your condition?
First I would be working full time. Do everything with my daughter that she deserves but I just cant with Stills.
If you had to describe your life in a sentence, what would it be?
I can do this.
Finally, what advice would you give to a person in a similar situation?
Don't give up! Even if your alone-have a good cry, feel sorry for yourself for 10 min, then stand up and say -This will not beat me! I did, you can to. Your not alone in your fight though you may think so.
