Ehlers Danlos &HSD
Connective tissue disorders can present with a wide array of symptoms and are complex to manage. We specialize in helping zebras with unique stripes dazzle on.
Ehlers Danlos and HSD
Ehlers Danlos and Hypermobility Spectrum Disorder patients experience a wide array of symptoms to hypermobile (loose) connective tissues in their bodies which can be challenging to manage. Patients often go a long time prior to getting a diagnosis.
Most doctors are trained "When you hear hoofbeats in the hallway, look for horses, not zebras." While it is ok to make sure not to miss a horse, the problem happens if we are so determined to see a horse that we refuse to acknowledge the zebra in front of us. Doctors are meant to specialize in the complex nuances of the human body. They should not give cookie cutter treatment recommendations. Furthermore, they shouldn't suggest that if you don't respond to those treatments, that your symptoms must be psychosomatic, or "all in your head". Regrettably, the traditional medical system often doesn't serve Zebras well.
We are committed to doing things differently. Patients need allies who listen and work with them on a team to look at the whole person. When working with Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder, every patient's stripes are a little different.
In consideration of the fact that every patient is different, there are a variety of treatments we may recommend to address your symptoms. While the type of treatment is important, we also understand that the dosing matters.
For patients who have been to therapy before and left feeling exhausted, discouraged and more sore than when they started, we'd encourage you to try again. Many patients who have tried exercising on their own, or even under the direction of a physical therapist may not have received the right dose or the right kind of exercise their body needed.
We are committed to finding the right type of treatment in the right amount for your body to lay a foundation you can actually build on over time. It is important to break the cycle of overdosing and under dosing activity. We do not want you to put all the energy you have into therapy, then spend the next 3 days unable to get out of bed. We want you to be able to gradually do a little more each day, so that therapy works with your life rather than disrupting it.
Dr. Heather Swain was always on the flexible side as a child. While this helped her in gymnastics in some ways, the nerve pain that went along with it was limiting. The only reason her Beighton Scale score wasn't a 9/9 is because the sciatic tension in her legs hurt too much to let her forward bend and put her palms flat on the floor.
Like most other people with hypermobility disorders, there were a few other diagnosis that came first. The fibromyalgia was the most obvious because her mom had it too. Then there was the POTS that got attention because she started passing out. As is often the case with zebras, her journey has been filled with lots of appointments, a growing list of diagnoses, and not a lot of answers.
As a clinician, she aims to do things differently, seeking answers both for herself and other patients like her that the medical system doesn't seem quite sure what to do with.
While she still works on teams with other doctors, in order to better advocate for herself, she's sought to learn everything she can. This has allowed her to take a more holistic view outside of just her own medical specialty, and improved her ability to coordinate her care to get the best results. While her life isn't perfect, she is able to work, spend time with family, and enjoy her hobbies.
What to Expect
We recognize that your medical history may be complex. We make out intake forms available online so you have time to fill them out. On your first visit, your physical therapist will first ask about your symptoms and review your history with you. Our evaluation appointments are generally scheduled for a full hour, but longer times can sometimes be accommodated if needed. After listening to your story, your therapist will take you through some testing to look at your flexibility, strength, muscle tension, balance/coordination, and how your nervous system is responding to your condition. They may also test other things based on your symptoms and other conditions you may have in addition to EDS or HSD. They evaluate all of these elements to ensure the therapist is treating the all of the systems involved to better address your symptoms.
We recognize that this testing can be overwhelming for some patients and it may be necessary to break up our testing over time. We encourage you to work with your therapist to let them know how you are responding so we can adjust our approach accordingly. After the evaluation is complete, we will begin the process of treating your symptoms to help you get back to living a full life again.
Not every treatment is right for every patient. Here are some of the possible treatments we may include in your plan of care:
Therapeutic exercise (stretching, strengthening)
Home exercise program (to promote your independence and symptom control)
Neuro rehab (for coordination, balance, stability training, and re-education of pain responses)
Manual therapy (massage, joint mobilization)
We also recognize that advocating for you and communicating with the other members of your medical team is important. We aim to legitimize your complaints with medical documentation, and work on a team with other providers to treat you as a whole person.