I was so excited and humbled when Erin asked me to guest post this month!
My name is Maya, and I’m a patient advocate. I have Marfan syndrome, a rare, life-threatening genetic disorder of the connective tissue. I’ve been volunteering with the National Marfan Foundation (NMF) since I was a teenager in various capacities, most recently as coordinator for the teen program and member of the board of directors.
You might be wondering why Erin asked me to guest post during Diabetes Awareness Month, when I don’t have diabetes. Well, my diagnosis is reason enough to be an advocate, but I’ve got 3 more reasons. My husband, Mark, has Type 1 diabetes, celiac disease, and Aspergers syndrome. Our older son, M, has autism. Our baby, J, has Marfan syndrome like me. Our family is a mixed bag of medical drama.
On the surface, these are very different disorders. They affect different body systems, require different treatments, have different symptoms and different outcomes. It’s easy - too easy - to focus on the differences. Many of us with chronic illness look for people like us, people who can understand the unique predicaments of our own diseases, and cling to them. Erin has asked me to write about the importance of coming together across diagnoses.
This summer I attended a mini-conference for parents of children with special needs. One of the speakers discussed how he believes that disability rights will be the next big civil rights movement in this country, and I agree. The only way that we’ll be successful in our efforts for equal opportunities is to combine resources. Alone our various patient organizations are small, but together we will be a force to be reckoned with.
The conference attendees took this idea and began to run with it. Think about it: at the basic level, we all want the same things. We want to be heard. We want good medical coverage. We want to be accepted--within our families, our workplaces, our communities. And although the specifics of what we want might be different, our basic advocacy efforts overlap. We realized that we have more in common than we’d originally thought, and created the Twitter hashtag #MoreInCommon to keep the conversation going post conference.
Coming together is useful in more ways than just politics, however. As non-profit organizations we can learn so much from each other. Take the JDRF’s Bag of Hope program, for example. What a great way to get newly diagnosed families connected to each other and the organization from the get-go! The NMF is now working on getting information packets into “Marfan clinics” nationwide to achieve the same goal. In turn, we’ve had various rare disease groups contact us about our conference setup because they’d like to adopt a similar format.
So this Diabetes Awareness Month I honor the journey that those of you with diabetes are on. I also invite you to come to the larger table so that we can learn from each other and advocate for a better future for those of us living with a chronic illness.