Next up in this month's Autoimmune Awareness Series is from one of our Fight Like A Warrior Ambassadors, Twitch. Check out some of her story below.
1. Can you please tell me about the autoimmune disease/s you have?
My name’s Twitch, and I have 2 autoimmune conditions. I am diagnosed with Henoch-Schonlein purpura (HSP) and PANDAS/PANS.
2. At what age were you diagnosed and how long did it take for you to get your diagnosis?
At the age of 7, I was diagnosed with HSP. Luckily, I was diagnosed about a week later from where my symptoms started. Treatment mainly consisted of steroids and strong antibiotics. To this day, I still experience chronic pain in my legs, tied in with my other chronic pain conditions. At age 8, I was diagnosed with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections/Pediatric Acute-Onset Neuropsychiatric Syndrome. Since PANDAS/PANS is a very controversial condition, it took about 1 year to receive a diagnosis. Many doctors refuse to believe it exists, so finding a provider was extremely difficult, let alone treating it. Treatment can vary from person to person, depending on how severe the case is. At first, we treated it like a strep infection; antibiotics. But because it progressed and how long it went untreated, we resorted to more aggressive ways. I ended up receiving chemotherapy (Rituxanmab) to kill off my B-Cells, in hopes to “reset'' my immune system. I still live with the long term effects. 3. What is something you wish people knew about living with an autoimmune disease?
I wish people understood that autoimmune conditions vary. Just because 2 people have the same disease, it doesn’t mean that they are affected the same! 4. What is the hardest part about having an autoimmune disease?
The hardest part of living with autoimmune conditions is never knowing when it’ll flare up! It can be scary, but I push through, because I’m so tough, I attack myself.
5. What gives you hope?
My supportive friends and family give me hope. I know that they will always be there for me, and I will always be there for them.
6. Tell us 3 fun facts about yourself!
I still do competitive dance. I won’t let my chronic illnesses stop me from doing the things I love. If I’m having a rough day, my teammates understand.
My favorite fast food place is Zaxby's!
I love doing makeup for fun. I don’t wear it everyday, but when I do get to play with it, I can express myself through it.
Thank you for sharing, Twitch! Follow on Instagram for more: @hannah.curie.21