10/16/2026
🤍🦓 The Story Behind the Ehlers-Danlos & Hypermobility Clinic at Addison’s
We don’t often write full posts about our clinic here. Most of the time, we’re talking about EDS, sharing educational content, answering questions, or hopefully helping someone understand something about their body a little better.
But we know many of you have wondered what we actually do here, how this clinic came to exist, why FSM became such an important part of it, and what my own experience with EDS has to do with any of it. So this one is a little longer than our usual posts. We wanted to create one place where we could tell you the whole story.
In this post, I’m sharing how years of pain led me to FSM, what happened when we decided to offer a six week pilot project to other people with EDS at no charge, what we learned from it, how those lessons helped shape the clinic we have today, and why my own very different medical chapter now has me experiencing parts of this story from the patient side all over again.
🤍 So, How Did We Get Here?
First, in case you’re just joining us, I’m Belinda Addison. I’m the EDS Coordinator here at Addison’s and someone living with Ehlers-Danlos Syndrome myself. Alongside Dr. Jason Addison, I help create the posts you read here.
To tell this story properly, we have to go back many years. There’s a version of this story we could tell that has a very neat ending. I was suffering greatly for years, I found something that helped me, and it eventually led to the launch of an EDS specialty clinic.
I got so many pieces of my life back. In some ways, I began finding the version of myself I remembered from 12 years earlier. Back then, I was enjoying life, had a career I truly loved, and was raising two beautiful young children. I had no idea how quickly life could change or how much of what I took for granted could suddenly be taken away.
If you live with Ehlers-Danlos Syndrome, you probably already know life rarely wraps itself up quite that neatly. My story certainly didn’t.
🤍 Before There Was an EDS & Hypermobility Specialty Clinic
For more than a decade, pain had made my world incredibly small. There were years when I spent most of my life in bed. Sitting through a meal could be very difficult. Riding in a car could be miserable. Ordinary things like folding laundry, sleeping through the night or being fully present with my family became things I missed.
I had undergone major brain and spinal surgeries and tried treatment after treatment. Some things helped certain problems, while others didn’t. Eventually, when it came to the pain I was living with every day, I stopped expecting there to be some wonderful next thing that was going to change my life. Then my husband suggested I try Frequency Specific Microcurrent, or FSM.
🦓 What Happened Next Was My Experience
I want to be careful about how I tell this part because this is my experience, not a promise about what someone else will experience. For me, though, it mattered tremendously.
After years of living with relentless pain, I began experiencing meaningful relief. I still remember crying because something had finally helped a part of my life I had almost stopped believing could change.
FSM didn’t take away my EDS, and my medical problems didn’t suddenly disappear. What it did was give me relief from pain that had consumed an enormous part of my life. But what happened next became about much more than me. One question kept coming back to us: “Could what was helping me help someone else too?”
🤍 So We Decided to Find Out
The relief I experienced didn’t just change my life. It sparked a mission. I didn’t even have to ask. Dr. Addison could see what that relief meant to me, and he already knew how deeply I cared about helping other people with EDS. He knew what a long and difficult journey I had already been through and how much of my life pain had taken away. With his own compassion for people living through difficult medical journeys, what began with my experience very quickly became our mission.
Especially because those tears I cried weren’t just because I felt relief. After more than a decade of being involved in the EDS community myself, I couldn’t stop thinking about my friends who had been on long journeys like mine and my own children.
But it went far beyond the people I knew personally. I thought about all the experiences people with EDS had shared with me over the years, and all the people out there living with Ehlers-Danlos Syndrome and relentless pain. Those whose worlds had become smaller the way mine had, and who were still searching for something that might give them even a little of their life back.
I knew what it was like to lose years of your life to pain. Now I also knew what it felt like to unexpectedly get pieces of that life back. I wanted other people living with that kind of pain to have the opportunity to find out whether this might help them too.
🦓 Our Mission Began
Before there was an Ehlers-Danlos & Hypermobility Clinic at Addison’s, there was a pilot project. We offered six weeks of FSM treatment at no charge to a small group of people with various EDS subtypes, including hEDS, who were living with unresolved pain and symptoms.
We learned quickly that this couldn’t simply be about choosing a standard protocol on a device and using it the same way for everyone. We had already customized several protocols through my own treatment that had been helpful for me, but there wasn’t simply a set of “EDS protocols” that could be applied broadly to every person with EDS. The initial protocols were only part of the treatment.
Medical history mattered. Patterns mattered. The problems contributing to someone’s pain mattered. As Dr. Addison learned more about each person, treatments were individualized and protocols were adjusted. Related issues were addressed, and other tools, including shockwave and cold laser therapy, entered the picture when appropriate too.
What we observed encouraged us enough to keep going, and it also helped shape something that has become even more important to us with time: people with EDS are not interchangeable, and their care shouldn’t be either.
The same diagnosis can come with very different combinations of pain, instability, nervous system symptoms, injuries, surgeries, movement limitations and other conditions. Something that helps one person tremendously may help another differently, or may require other tools too.
🤍 Feeling Better Was Only Part of What We Were Learning
To be quite honest, I would have been perfectly content with the pain relief I was experiencing. After living with pain for so long, that alone felt enormous. But as I continued treatment, I began noticing other changes in my everyday life too.
I had an entire drawer full of braces and supports I had needed regularly, and at some point I realized I simply wasn’t reaching for them the way I once had. I was finally getting restful sleep. The brain fog that had interfered with my ability to focus wasn’t getting in my way the way it once had. I could concentrate and write more. I was cooking full meals. I could make it through an entire load of laundry without leaving it sitting wrinkled somewhere, and I was even hanging my clothes up afterward. Those may sound like ordinary things. To someone whose world has become very small, ordinary things can feel extraordinary.
We also learned something else rather humorously. Feeling better didn’t necessarily mean my body was immediately ready for everything I suddenly wanted to do. Early in treatment, I had one of those days when I felt so good that I spent about four hours sweeping, vacuuming, organizing my little closet and doing more household chores than I had probably done in the previous four months.
Later, my husband asked me, “How’s your pain?”
“About a seven.”
His immediate reaction was essentially, Oh no.
I stopped him. “No, you don’t understand. I felt so good I did all of this stuff today.” 😂
I had felt well enough to do more, but I was still early in treatment and my body wasn’t accustomed to that kind of activity anymore.
Then we started seeing versions of the same thing during our pilot project. People who had been living much more sedentary lives because of pain would begin feeling better and suddenly tackle something they hadn’t been able to do for a long time. Someone might decide this was the perfect opportunity to clean out the garage, only to return hurting after asking their body to do far more than it was accustomed to doing.
We lovingly started calling it the “Ah-ha moment.” It became another important lesson we carried forward. Experiencing relief could make someone want to do more, but rebuilding physical capacity still needed to happen gradually. Feeling better and being physically prepared for a sudden increase in activity weren’t necessarily the same thing.
So we began encouraging people to take that newfound ability to do more and build on it a little at a time, while continuing with their treatment plan rather than trying to reclaim everything at once.
🦓 That Project Became Something More
Those experiences helped shape what eventually became the Ehlers-Danlos & Hypermobility Clinic at Addison’s.
FSM remains an important part of what Dr. Addison does here, but the clinic has grown into something much larger than the treatment that helped start it.
We listen first, and when we say that, we mean it. A new EDS evaluation typically takes about an hour because Dr. Addison wants to hear the full story, not the abbreviated version someone has learned to squeeze into a few minutes. What has happened? What has helped or made things worse? What have they already tried, and what concerns them most?
From there, he evaluates how the nervous system, joints, stability and movement patterns may be working together. The goal is to understand what is actually limiting the person sitting in front of him and determine what might help them move forward.
For one person, pain or nervous system irritation may be a major part of the picture. Another may need more attention placed on movement, stability, strength or function. There are also times when the most valuable thing we can do is recognize that something warrants evaluation outside our clinic and help that person understand where to go next. That part matters deeply to me because I know what it feels like to spend years searching for the right help.
Over time, something else happened that I don’t think either of us imagined when this began. People started traveling to Kennesaw from outside Georgia for care and we designed a program specifically for that. Coming from another state doesn’t necessarily mean their care has to end when they go home. After being evaluated and treated here, many patients continue FSM at home with a device and individualized protocols prescribed specifically for them by Dr. Addison.
But home devices aren’t only for people who live far away. Some of our local patients choose to have one too. Having a device at home means FSM is available when they need it. Maybe they did a little too much one day, are dealing with an increase in symptoms, or simply recognize that their body could use some extra support. They have a tool available at home using protocols Dr. Addison has selected specifically for them. For some patients, home FSM becomes another tool alongside their in clinic care. For others, particularly those who travel to us, it provides a way to continue their care once they return home.
Those who choose to continue care at home with a prescribed device don’t simply disappear from our lives. That’s one of my favorite parts of what I get to do here. If someone needs help navigating the process, has a question, wants to tell me about something they were able to do again, or just wants someone who understands why a seemingly ordinary little win feels enormous, I’m here. I get to walk alongside people in a way I desperately would have valued during some of the hardest years of my own journey.
Helping someone find a little more life again and getting to celebrate those wins with them is one of my greatest joys. In a beautiful way to me, it has given all those years of pain and suffering a purpose I couldn’t see while I was living through them.
🤍 Then My Own Story Changed Again
This year, EDS reminded me rather spectacularly just how unpredictable life with this condition can be. I began experiencing neurological problems that ultimately led to another extensive neurosurgery.
So if you met me today, you wouldn’t meet the woman in the old version of this story who had gone from being mostly bedridden to getting so much of her life back and enjoying that life for several years.
You’d probably find me in my recovery room. 😅
I’m rebuilding again. I’m learning new ways to dress myself and figuring out how to do ordinary things with a body that currently has very different limitations. I celebrate accomplishments now that another version of me would never have thought twice about.
🦓 FSM Is Here for This Chapter Too
Years ago, FSM was part of a chapter in which I experienced relief from pain that had consumed so much of my life. Today, I’m using FSM as one of the tools supporting me through a completely different chapter of recovery.
The fact that I began experiencing neurological problems associated with serious instability below my previous craniocervical fusion, ultimately requiring fusion from my skull to T3, does not erase what helped me before. What helped me before did not prevent me from developing a different problem later.
Both things can be true.
I think that distinction matters, especially when we’re talking about life with EDS. Progress doesn’t always follow a straight line. We can make enormous progress and then something changes. We may need a different specialist, a different treatment or an entirely different approach. Sometimes we find ourselves rebuilding more than once.
None of that makes the progress we made before any less real.
🤍 In Some Ways, I Understand Our Mission Even More Now
This newest chapter has reminded me why this special part of the clinic was created in the first place. It was never supposed to be a place built around pretending we had one answer for EDS. It grew from lived experience, Dr. Addison’s clinical experience, a willingness to keep learning, and the belief that people with complicated bodies deserve to be listened to before someone decides what they need.
My story is still being written, and so is this clinic’s. What began many years ago with one treatment that unexpectedly gave me relief became a question. Could what was helping me help someone else too? That question led to a pilot project, and what we learned helped inspire the EDS and Hypermobility care we provide at Addison’s today. Everything we have learned since, from the many people who have trusted us with their care and from our own experiences, continues to shape what we do today.
🦓 Why We’re Still Here
I don’t know exactly what the next chapter of my own recovery will look like. I do know how grateful I am that something which once gave me hope eventually became part of a much larger mission to help other people find their own path forward.
Yes, that means I love this part of my life so much that I’m still doing it while recovering from neurosurgery. It may take me a little longer sometimes, but I’m still here doing what I enjoy most. I’m no longer telling this story from the other side of EDS with a perfect little bow tied around it. I’m telling it while I’m living it again. Just maybe that makes the reason we’re here even clearer. 🫶🏻🤍
Sincerely,
Belinda Addison
Fellow Zebra & EDS Coordinator
Ehlers-Danlos and Hypermobility Clinic at Addison’s
FSMforEDS.com
