A great video on what life with Scleroderma is like. I think she does a powerful job of describing the disease in an understandable way, what it’s like going to doctors and them not knowing or recognizing it, and the realities of vital drugs with side effects that are brutal.
The drug she mentions, methotrexate, is one that Noah was on for a little over a year. He’s our six year old son who has localized scleroderma on his face; it started showing up when he was three, but doctors were unable to diagnose it until he was four and a half. It’s the preferred treatment (even though not designed for this use), but ended up being too rough on Noah’s liver and body so we had to stop a couple months ago before we could ever get him to the dosage levels he needed.
June is Scleroderma awareness month. Share the video to help build understanding!