On February 23rd, I was a guest on the Stanford MedX Rare Disease panel. It was my first google hangout, and it was fun. Other than having a technical issue that prevented me from having a cool name listing like the other panelists, I thought it went well. Because i was under 18, they had my mom participate in the background.
We discussed what it is like to have a rare disease and the challenges with explaining it to others. We talked about the importance of research and connecting with other patients online. It was great to hear other share their stories. There were other patients, a caregiver, a doctor, and a journalist on there as well, and it seemed like we had some common stories to share.
There are over 6,000 rare diseases, and together they affect about 30 million people in the US. When you put them all together, they are not that uncommon, but each individual disease has less than 200,000 people with it in the US. That is the definition of a rare disease.
CureJM.org has a lot of information about my rare disease, Juvenile Dermatomyositis. If you are interested, check it out. The more people learn about rare diseases, the more we can have faster diagnoses and better treatments. Cure JM also has a patient community that is great at helping families get information they need.
Another resource we discussed was butyoudontlooksick.com and the Spoon Theory. If you haven’t heard of it, it is a great explanation of what it is like to have a chronic disease that causes fatigue. Many people don’t understand what it is like to look well on the outside but to feel badly and suffer from fatigue.
Check out the video and let me know what you think!