My Nonprofit Reviews
Chelsea Harris T.
Review for Autoinflammatory Alliance, San Francisco, CA, USA
The Autoinflammatory Alliance, for my family, is synonymous with the word "hope." Hope for a diagnosis, hope for a treatment plan, hope for a doctor to listen and hope for the future of my children.
My son Jack became so sick when he was 9 months old, but looking back, was not right since birth. We're one of the lucky ones- we only got brushed off by a handful of doctors before our wonderful rheumatologist finally saw something was wrong and got us an appointment with NIH within two months of the "I believe you" appointment. I documented everything I could think of because of the knowledge I gained and the support I received from The Autoinflammatory Alliance and it's Facebook group. I KNOW this is why we were heard so quickly.
My son is doing so much better. He is seen by his Rheumatologist in DC and the team at NIH and is on Enbrel. We're finally seeing less symptoms and I am so grateful. I can breathe again.
His sister is also in the process of being diagnosed. She, too, has become symptomatic within the last year (maybe longer?), but I'm not going crazy with what I'm going to do to help her like I did with her brother. Why? Because now I have knowledge. Now I have hope. Now I know I'm not alone in this fight and I have such gratitude to the Autoinflammatory Alliance for giving me a little bit of peace and courage to advocate for my children.