It means that most of the time, a person has a common diagnosis, not a rare thing going on. Not everything is a Dr. House situation. (Anybody remember that fabulous medical mystery show?)
Except, the Ehrler-Danlos Society explains that sometimes, you are the zebra.
I had an appointment with a geneticist this week, from a referral placed by my GP last year, and received a diagnosis of Hypermobile Ehrler-Danlos Syndrome (hEDS). Bryce said, "you're kind of racking up these initials," because... PCOS/PMOS, ADHD, hEDS. Sigh. (I mean, but also MSEd (Master's of Education) and NBCT (National Board Certified Teacher). They're not all maladies!
What is hEDS? A connective tissue disorder where you are hypermobile -- your joints are loose and bendy and you are prone to injuries, migraines, and a host of other issues because connective tissue is literally EVERYWHERE.
I have always had what my parents called "tinker toy joints." My joints popped in and out (shoulders and elbows in childhood) all the time. I sprained my ankle SO MANY TIMES in childhood and in adulthood. I basically have an area of the attic storage space that is various orthopedic splints and supports and braces. I was born with a dislocated hip that unfortunately wasn't discovered until I was about 9 months old because medical professionals didn't believe my parents when they said something was wrong...so I ended up with surgery to reset both legs and was in a cast from the waist down with a hole for diapers (good gracious) for a while, followed by braces, followed by what seemed like forever in clunky orthopedic shoes (which now I have "stylish" orthopedic shoes). Behold, little baby Jess in her cast:
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| Happy riding the "high chair" like a horse |
I have all my various falls and slippages and many many unexplained bruises. (Fun fact: both hEDS and ADHD result in you having poor proprioception, or knowing your place in space. Yay!) And, I had two necessary total knee replacements before age 50, which is apparently not the norm.
My Pilates instructor and both my in-home PT people after the knee replacements questioned if I had hEDS. I am definitely hypermobile. I am definitely a hyperextender and a "bendy body." I did all these things below.
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| Image from https://reenvisionpt.com/heds-and-hsd-and-the-role-of-pt/ compiled from the Ehler Danlos Society. |
So now, I get to have unlimited physical therapy, and am thrilled to have it in my chart now because apparently my previous colonoscopy experience where the anesthesia didn't work is not uncommon with people with hEDS! The continuing on despite pleas of "I can feel that, ouch, ouch, argh" is NOT common. Grrr. Thankfully the next place I went was phenomenal.
I feel a sense of relief, because there are so many things that can be explained through hEDS, and MCAS, mast cell activation syndrome. Which is why I am so freaking hivey with such sensitive skin that gets those "exuberant reactions" that I've been plagued with.
There is a reason for my joint pain. There is a reason I'm klutzy. And, people with hEDS have a high prevalence of ADHD, which was interesting. Not necessarily the other way around, but it was fascinating to see the things that crossed over.
So there's that. I have new letters. I am a zebra, not a horse. And now I can figure out how to take care of this gumby body as I move through menopause into my older years.
Dear Jess,
ReplyDeleteI’m glad you finally have some answers and a name for what you’ve been dealing with all these years. And yes, of course I remember Dr. House—what a fantastic show! I’ve watched every season at least twice, so I immediately smiled at your zebra reference. Wishing you all the best as you learn how to care for your wonderfully unique zebra body.
Warmly,
Klara
Wow, Jess! I am so glad (and sense your relief) that you have some answers for why you've been experiencing these health issues. I hope this helps! (((HUGS)))
ReplyDeleteCrazy! I was curious to learn what some of our overlapping health issues share in common. All are complex, systemic conditions that cause chronic, widespread inflammation and can lead to immune system dysfunction. They are also notorious for causing overlapping, hard-to-pinpoint symptoms like extreme fatigue and localized pain, which often result in significant diagnostic delays. While Sarcoidosis is an inflammatory disease characterized by the growth of tiny collections of inflammatory cells (granulomas), Endometriosis involves tissue similar to the lining of the uterus growing outside of it, triggering pelvic and systemic inflammation. Ehlers-Danlos (EDS) is a group of inherited connective tissue disorders that weaken the body's structure, often causing severe chronic pain and secondary immune responses. The primary threads connecting them include: Overlapping Symptoms: All three can cause severe fatigue, chronic pelvic/abdominal pain, and immune dysregulation. Mast Cell Activation: There is a well-documented clinical overlap between these conditions and Mast Cell Activation Syndrome (MCAS), where the immune system overreacts. hEDS frequently overlaps with autonomic nervous system disorders like Postural Orthostatic Tachycardia Syndrome (POTS) ... and immune issues like MCAS.
ReplyDeleteSo, we can't say we're not interesting and who knew how much our bodies could challenge and confound!?
THAT EXPLAINS SO MUCH, my zebra friend! Finally, you are able to connect so many dots. I'm laughing at what Bryce said about racking up initials #funnynotfunny
ReplyDeleteI too, am glad you have a diagnosis that makes some sense of some of what you have been experiencing. May the additional knowledge and strategies prove helpful in future navigation of your journey.
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