The short version of the story is this: Systemic Juvenile Idiopathic Arthritis (SJIA) is a chronic autoinflammatory disease for which there is no cure. The Systemic JIA Foundation is working to change that, by funding essential research to find a cure. G has been living with this disease for five years, and she has been through hell. In November I am running a half marathon, and am trying to raise $5,000 for the SJIA Foundation as part of that effort. I hope you will join me in supporting the Foundation with a donation in honor of G.
The long version of the story is this: it has been five years since G was diagnosed with SJIA and macrophage activation syndrome (MAS). In autoinflammatory diseases, such as SJIA, the immune system becomes active for reasons that are unclear, and then remains active and begins to attack healthy cells and tissues. SJIA is a severe autoinflammatory disease affecting the entire body, characterized by high spiking fevers, and causing damage to joints and organs, including the heart, lungs, and liver. SJIA is the rarest and most severe type of JIA, and has the highest morbidity and mortality rates of any type of JIA. MAS is a life-threatening complication of SJIA, that is not well understood by doctors.
G was first treated with high dose steroids, but after those alone could not control her disease symptoms, we moved on to biologics. Biologics are a type of medication that target specific sources of inflammation in the body. G is allergic to two biologics commonly used to treat SJIA. She is currently on a third type that involves getting a monthly injection at Boston Children's. Though this biologic has worked fairly well, she still has to be on other daily medications to control her disease.
Biologics are game changers for a lot of patients, and we know they would not be an option if not for years of dedicated research. But we also know biologics do not work for everyone, or are not enough to control SJIA (as with G). Families and patients need more options, and in order to have more options, we need more research.
The Systemic JIA Foundation is dedicated to helping families dealing with SJIA, by funding essential research, and holding conferences to connect patients and doctors. It is run by families for families, and they are doing amazing work. That is why I am running a half marathon in November in Portsmouth, NH, and trying to raise $5,000 for the Foundation (if I were in better shape I'd run a full marathon, but I know my limitations!). I will be thinking of Georgia, our warrior, every step of that race. It is impossible to articulate the ways in which SJIA permeates every aspect of a patient's life - the potential for serious side effects, complications from a compromised immune system, hospital stays, and the prospect of disability or death are constant backdrops to living with SJIA. The SJIA Foundation is working to change that reality. I hope you will join me in honoring Georgia by making a donation to the SJIA Foundation. Thank you.