The Lead Up
In 2021 I switched insurances and had to find a new primary care provider. I found someone who had good reviews, and listed "hypermobility" as an interest in their bio. At the time I didn't know I had Ehlers Danlos, but hypermobility/hEDS was suggested by my Physical Therapist to look into.
She had a long wait time for a primary care provider (1.5 months?), and by the time rolled around for the appointment I almost cancelled because I convinced myself (or more like other doctors had convinced me) that my symptoms were un-solvable.
Little did I know that appointment would change my life.
Not only did I receive my Hypermobile EDS (+ comborbdities) diagnosis from her, I also received the one thing I never have received from any other doctor; validation.
I cannot begin to explain what it is like having a medical professional actually listen to you after so many years of being gaslit by doctors. Now I know what it is like to have good, no, GREAT care.
After about a year of bi-monthly appointments, she told me she was leaving the primary practice. I was HEARTBROKEN. But, she was leaving to start Washington's first EDS Clinic. WOOHOO!🦓💕
While I lost my primary care provider, I also got to become a patient at The EDS Clinic with one of the most knowledgable, compassionate, motivating providers out there.
I do not say it lightly when I say Rebecca changed my life.
At the time, I was ready to give up one of the things I love most (teaching dance), I could barely get through my day, and I didn't really have much hope of feeling any better. Rebecca changed all of that.
"To me, your health is personal. You are not in this alone. You just haven't had a provider who has the knowledge & expertise you deserve."
Not only is she the best EDS detective there is, she also has EDS herself. When your provider can understand the same or similar symptoms you experience, it is so helpful. She gets it. If you want to read her full story, click here! - when I first read this I started crying because it was like reading my own thoughts!
My Experience with The EDS Clinic
"We believe you. We can expertly lead you toward better health, the answers you deserve & lasting improvement."
I'm assuming that a handful of hypermobile people that read this post will be reading to see if The EDS Clinic is a good fit for them. Short answer: yes. Long answer: yes, and let me tell you why.
I'll preface this all with yes, medical care costs money. And this level of beyond exceptional care is going to cost more money. I am by no means rolling in dough, but if you're are able to arrange your finances, it's pretty amazing what putting your health first does to your life.
I'm sure every experience will be different since EDS is such a spectrum (and especially since I was already her patient), but here's a very condensed summary of my experience thus far:
I did a special program with her that was roughly 6ish/7ish/8ish weeks (things got complicated with holidays!)
Filled out 4 hours worth of paperwork and record uploading - for real it was a lot of paperwork! BUT it was important, AND it included goal oriented questions which I love.
Had my first telemedicine appointment and went over the program, what I was hoping to get out of it, and next steps.
Had a 1.5+ hour long telemedicine appointment. No more crazy short 15 minute primary care appointments where you feel like you don't have enough time to say everything! HELLO VALIDATION.
Rebecca sent me a box of goodies (what provider is that nice???) that included a guided Enneagram Journal that she wrote notes in. The goal was to help understand my own personality better so I could learn how to best help myself in healing/life.
Two sets of at-home labs (I collected urine, blood, and spit at home then shipped it) for Nutrition and Neuroendocrine testing.
Had two appointments to review those results (also 45-60 minutes) - Maybe I'll make a separate post about what the results said!
Added some supplements to my routine (based off of the results) and was referred to a Nutritionist.
Had a nearly 2 hour appointment with Rebecca discussing what we've learned and the plan moving forward. Oh yes, and another goodie bag because Rebecca is the nicest human ever.
And now I'll have a follow-up appointment in two months or so.
One of the highlights of my experience was that every symptom was acknowledged. Am I 100% healed and cured from all my ailments?? No. But I wasn't expecting that! There might not be an instant fix - but working with Rebecca does provide you with knowledge, resources, hope, and (my word of the day apparently) validation.
I mean getting goodies is one thing, but all of these items are based off of conversations we had and symptoms I'm experiencing. Come on Rebecca, you're setting the bar too high!
The Wrap Up
Well that was a long post, but it's well deserved! I hope this post helps someone discover what a good provider can do, and how much it can change your life. I am forever grateful for my experience. Now I'm a little bit mad though because I don't think I'll ever go to another doctor without expecting this level of amazing-ness!
Stay Kind. Be Brave. Much Love.