Since I just got my Ehlers-Danlos Syndrome diagnosis last summer (finally!), this was my first time taking part in EDS Awareness Month, which is every May. I was thrilled to be a part of several activities to increase awareness for EDS, and to get to meet some new people who are doing the same thing.
Awareness Table at Beth Israel Deaconess Hospital in Boston – East Campus, May 2
This was the first time I met Jon Rodis, a passionate advocate for chronic pain and rare disease patients, who is the President of the Massachusetts Chapter of the Marfan Foundation, the founder & Co-Chair of the Ehlers-Danlos New England/Massachusetts Support Group, and the founder & Chair of the Physician Awareness Committee(s) for Marfan & Ehlers-Danlos Syndrome(s), among other things (he wears many hats!). He and his co-leader Diana worked to get Governor Baker to proclaim May EDS Awareness Month in Massachusetts.
We had talked over the phone about our mutual interests, and he invited me to join in the awareness activities his group had planned for EDS Awareness Month. Jon had a table with educational materials set up in the East Campus at BI, and I joined him for half the day, talking to doctors, nurses, and passersby about EDS and Marfan Syndrome (another connective tissue disorder).
We talked to gastroenterologists, including Jon’s own GI doctor, an anesthesiologist, who heard for the first time that many EDS patients are unaffected by various forms of anesthesia, and people walking by who said “What is EDS?” or “I have a friend with that!” It was a very rewarding experience, I felt like we really made a difference, just by informing the anesthesiologist alone.
Awareness Table at Beth Israel – West Campus, May 11
A week later, Jon had arranged another table in a different part of the hospital. It was similar, although this time there were two other women there, which was great. Both of these experiences were helpful for me as well as hopefully for others, because I got to talk to more zebras about daily life with EDS and make some new friends.
After those activities, I was really tired and in a lot of pain. Pretty much any activity takes a toll on me, and even just sitting and being social wears me out. But I like to think that maybe one more person will be properly diagnosed because of what we did, and that makes it worth it!