It was the spring of 2015 and I was still trucking my way through finishing high school. I busied myself with other things as well, such as seeking out others with Ehlers Danlos Syndrome. I got a tip from the neurologist who diagnosed me that every few months people gather at a Toronto library for a support group meeting. I was extremely excited to meet others going through the same thing as me and was hopeful that trading tips would help improve my situation. Interestingly enough, I was the only male attending these events. This is funny in a way because I faced a similar situation at summer camp, being the first boy to go for my age group. Whereas that was just happenstance there is a good explanation for the women with EDS. First of all, women are naturally more flexible and so it's more obvious when they have EDS. Then there's the fact that women are simply statistically more likely to seek out a diagnosis and treatment for their health issues. Lastly, the disease is just slightly more prevalent in females statistically for whatever reason. The plot thickened when I realized that everyone had some sort of trigger for their chronic pain in the same way Swine Flu triggered mine. The difference is that for most of them the trigger was childbirth, since that puts so much stress on your body. The rest suffered viral illnesses in the same way I did.
Everyone at the meeting was pretty excited when a guy showed up and they immediately got to work on integrating me with their organization called EDS Canada. They asked if I'd be willing to create and administrate a Facebook group specifically for men with EDS. The idea was providing a safe space for men to express their difficulties and discuss gender specific questions and concerns. And just like that I became an advocate for both EDS and invisible illnesses in general. I built the group and it now stands at 20 members. That might not seem like a lot but that's almost every male within the EDS Canada community. Apparently we are a rare breed.
I had helped in a small way but I certainly didn't stop there. I thought: what else could be done to advance the collective interests of all those with this debilitating disease? I realized I was in a somewhat unique position being the son of a Member of Provincial Parliament. The position of an MPP has inherent power that can be used for good or ill. Something all MPPs are able to do is read out statements within the legislature bringing aid and recognition to various causes. Working together with EDS Canada we wrote a speech that my mom would read out in the legislature. Virtually everyone on all sides of the political spectrum were happy we were there and applauded us for fighting the good fight. Some of my companions with EDS were moved to tears during the speech because they were finally witnessing the recognition of their struggles by the government. Little did we know that the best part was yet to come. Months later the provincial government announced plans to open an entire clinic for people with EDS! This is exactly what we needed as patients since the vast majority of doctors don't know or understand EDS in any substantial way. For most (as my doctor dad and brother can attest) they were given a single lesson on EDS in medical school and it was never followed up on again. What we need is specialists who can advise regular doctors on matters concerning EDS. That's exactly what we got. For those within the EDS community this has development has been viewed as a direct result of the statement in the legislature I planned. This means a lot of people are giving me much of the credit for the clinic opening, which is the biggest honour I can imagine. Later I would become one of the first patients to visit the new clinic. I couldn't have asked for a greater reward. Here's the link to the news story: http://www.ctvnews.ca/health/ontario-to-set-up-clinic-for-people-with-rare-disease-eds-1.2797357#_gus&_gucid=&_gup=Facebook&_gsc=kcXsPEK
