This week, instead of a topic from my perspective, I thought it might be interesting to read about someone else’s experience. Lorelei has anterior uveitis, associated with Juvenile Idiopathic Arthritis (JIA). I’ll link some sites about JIA at the end.
I met Lorelei’s dad through work before she was born. I remember how scary it was when Lorelei was diagnosed and I couldn’t believe that she also had such a “rare” disease. 10 years later we even see the same doctor. Meeting her, you would never guess she battles an autoimmune disease; it definitely isn’t stopping her!
Lorelei Burnett, 13
Hobbies: Playing Soccer
Last book you read: Unpregnant
3 things you can’t live without during #stayathome: As much as I hate to say it my phone, a soccer ball and my dogs
About your uveitis:
What type of uveitis do you have / what is your diagnosis? Is your uveitis associated with another condition or disease?
I have Juvenile Idiopathic Arthritis (JIA) which caused my uveitis.
How did you know something was wrong? When were you diagnosed and how long did it take?
When I was first diagnosed I was three years old and my parents had noticed that my eye was red and inflamed. They took me to the doctor for what they thought was pink eye, but when the antibiotics for pink eye didn’t work and the different allergy medications they tried didn’t work, they finally decided on sending me to a child ophthalmologist who was the one who diagnosed it.
How are you currently treating your uveitis? What other treatments and/or procedures have you tried?
When I was first diagnosed I had two surgeries one to remove the lens in my left eye which had a cataract on it. ( At that time I was also one a lot of different steroids which with uveitis can sometimes cause cataracts.) And then another surgery to remove scar tissue from the first surgery. Currently I take Humira which is an immunosuppressant which keeps me from having flare-ups. It’s a bi-weekly injection that I can give myself at home. I also take methotrexate which is a chemotherapy drug which stops me from having reactions to some of the other medications. In the past I was on remicade which you have to take intravenously so it was really hard to go to the hospital and miss so much school.
Do you have flares? What are they like?
When I’ve had flares in the past for me I’ve never really been able to tell when they were happening, my JIA, except for when I was really young, has only affected my eyes so for me there is really no tell-tale sign that I’m having a flare-up. They’ve happened in the past when they’ve been trying to wean me off my medication.
What is the hardest part of having uveitis for you?
Honestly I’ve been really lucky it really doesn’t affect my daily life. I guess one of the hardest things in the past was having to go to the hospital sometimes having three weeks to get my IV’s. It was hard because I missed a lot of school between IVs and opthamologist and rheumatologist appointments. But since I’ve switched to at home injections it’s been so much nicer. One thing that’s always been super hard is taking the methotrexate when I was younger it was always a battle between my parents and I to get me to take it. It’s really hard on your body and I would end up throwing up most of the times I took it even though I was at such a low dose.
How has having uveitis changed your life?
Aside from doctors appointments and medication it really hasn’t. I can still play sports and do everything someone without uveitis would.
Do you research uveitis (causes, treatments, etc) or get all your info from your doctor?
I’ve researched a lot about it in the past, I actually did a whole presentation on uveitis and JIA for one of my classes this year.
Do you think people know about uveitis? What do you wish people knew about uveitis?
Honestly I don’t think a lot of people know about it. I’ve tried to explain it to my friends and when they hear about my surgeries they either get grossed out or I get met with blank stares. I really want people to know that kids get uveitis and arthritis too, in fact JIA is actually more common than childhood type 1 diabetes.
Anything else to add?
I guess I just hope that anybody going through a diagnosis or living with it right now knows that they’re definitely not alone. I also hope everybody is staying safe and staying healthy right now at this crazy time.