Connective Issues Launch
Hi, I’m Jaime, and I’m really glad you’re here!
This project has been building, unbeknownst to me, in the background of my life for a while now. Connective Issues is part science, part story, and part refusal to let Ehlers-Danlos Syndromes continue to be misunderstood, misdiagnosed, or ignored.
Why I Started This
For years, I lived with symptoms I didn’t have a name for, daily aches and pains, joint instability, headaches, GI problems, fatigue, exercise intolerance. I assumed most of it was related to weight or just how my body worked. It wasn’t ideal, but it was manageable… until it wasn’t.
After losing a significant amount of weight, the symptoms became harder to ignore and harder to explain away. They were still there, and getting worse. Around that time, my cousin Sabrina, who’s ten years older and had been through her own long and treacherous medical journey, was finally diagnosed with Ehlers-Danlos Syndrome. Suddenly, everything clicked. The symptoms we both shared, the patterns, the missed clues. I then found an EDS specialist, got a diagnosis, and finally had a framework for understanding what my body had been trying to tell me for years.
In hindsight, the signs were always there. I was just missing the right context.
That’s why I started Connective Issues, to offer that context to others. To bridge the gap between symptoms and science, between patient experience and medical recognition. I was lucky to have Sabrina go through it first. Most people don’t get that. I want this platform to be the shortcut someone else needs.
What This Platform Is
This space exists to:
Explain what EDS is, in clear, grounded terms
Share stories from people living with it, and those who care for them
Highlight the science behind the symptoms, without drowning in jargon
Offer practical tools and insights to help navigate this complex condition
Support the book I’m writing (also called Connective Issues), which blends all of the above
It’s for patients, providers, researchers, friends, family, the “undiagnosed,” and anyone else who’s ever been told their symptoms don’t add up. Because they do. You just need the right framework.
How You Can Help
If you’re interested in supporting this work, here are a few simple ways to get involved:
📝 Take or share the EDS survey – Your story matters, and your answers will directly inform the research and writing. https://forms.gle/W8s88tLRSw4sWrLM7
📢 Share the platform – Awareness spreads when people talk. Share posts, follow on social media, and tag friends who might need it.
📬 Reach out – If you have something to say, a skill to offer, or just want to connect, my inbox is open.
📖 Subscribe – Stay in the loop as new content, research, and book updates go live.
Everything made sense after I got the diagnosis. Now, I just want to make it easier for others to get there too and to live the best life possible once they do.
Thanks for being part of this.
— Jaime
