I am the parent of a child with a chronic autoimmune disease. I am also an RN who has worked in healthcare IT and electronic medical records for over 15 years. In the year and a half since my daughter was diagnosed, I have come to realize how much patients need their data and how much they need to collaborate with other patients and providers. Patients live with their disease 24 hours a day and have a lot of information to offer to other patients and to their healthcare.
When my daughter was diagnosed with this rare autoimmune disease, Juvenile Dermatomyositis, it was extremely difficult as a parent. Nobody had heard of it, including her primary care provider. She was 11 and in middle school which presented a whole host of other issues.
Social media allows patients to find others with the same condition who have similar issues. Sometimes, the patient just needs to know that others have the same problems. Other times, the patient needs to know that there are other solutions to try. Yet, other times, a patient may have learned of a treatment that can help when their doctor may not be aware of it.
Thankfully, we found a website, CureJM.com and a social media group that helped tremendously. It also exposed us to research that we weren't aware of and taught us that there were experts focused in this disease that you could see periodically.
