The EDS & Aging Project
presented by EDS Awareness
This is a community-centered project with people older than 45 who want to share their experiences about aging as a person with EDS. This project will be published as part of the EDS Awareness Newsletter in a collaboration between CEO John Ferman and journalist Karina Sturm.
The Funny Bone News came to life when John, CEO of EDS Awareness, asked me if I, as a journalist, would want to lead a new community-focused project: a newsletter that shares news, research, and valuable content for our community. How could I have said no to it? So almost a year ago, we sent out our first newsletter, and since then, a lot has happened. We received many responses from you, our readers, mentioning various topics they would be curious to learn more about. So every month, I spend several hours curating the newsletter, including whatever you asked me to feature.
A while ago, a community member reached out and told us about the lack of support for aging people with EDS. Now, I am 35 and didn’t have too much exposure to this subject, but I quickly realized that a lot of the information on EDS is tailored to a younger community or people newly diagnosed with EDS, but I couldn’t find much specifically supporting older EDSers. EDS Awareness decided it was time to change this, and the EDS & Aging Project was born.
This being said, in the future, we plan more projects like this focusing on other aspects of life with EDS. For example, we would love to hear from our male community as well, but one area I am particularly interested in is to feature people who belong to multiply marginalized communities! If you feel like this is you, please get in touch, and let’s work together!
You – the people within our community – all know the Ehlers-Danlos syndromes are a diverse spectrum of conditions. Not only does every type come with its specific set of features, but even within one and the same type, symptoms can vary from mild to very severe. People can have almost no limitations throughout daily life; others might identify as being disabled.
However, one area that’s barely ever talked about is: EDS & Aging. Why is that? I mean, we apparently all grow older. It is well documented in the literature that symptoms of EDS might be tied to hormonal fluctuations. For example, many people with EDS describe experiencing a progression of EDS symptoms with puberty; others say, when they got pregnant, their condition changed; and then there is menopause, which marks another milestone in everyone’s, but especially an EDSers life.
So with this project, we wanted to give a voice to the aging EDS population. We asked them each five questions, and here, we present to you a selection of their responses, which will hopefully support other aging people in the community or lead the way for people in their 30s or 40s who really don’t know what to expect in the future.