Sunday, May 1, 2016

EDS Awareness!

This past Thursday, Xan and I got in our car and drove the 2 hours to Strong Memorial Hospital in Rochester, NY for an appointment with Genetic Counseling.  To be honest, neither of us were absolutely sure which outcome we were looking for: For the doctor to say you are fine or for the doctor to confirm a diagnosis we suspected.

Xan first became aware of Ehlers-Danlos Syndrome a couple years ago and despite EDS being a fairly rare syndrome, he has since become friends with 4 people who have it.  One with the Vascular type (the severe and life threatening type), one with possibly the Classical type, and the other two with the Hypermobility type.  As he has gotten to know each person better along with their specific health problems, a light bulb went off in his head that I appeared to have a lot of similar issues as those with the Hypermobility type.

Between my habit of lounging in weird positions that are deceivingly comfortable...


To frequent injuries for things like standing up, walking down stairs, and putting in the clutch while driving (no trauma or rolling of ankles, mind you...)


And some of my joints having no end to their range of motion minus physical obstacles... such as my back.  (I feel absolutely no stretch to the muscles in this position...  Hyper-flexible cervical spine = chronic headaches, migraines, knotted shoulders.)


He began to put the pieces together and started encouraging me to look into it.  He knows me well and simply planted the seed and let my mind run wild... eventually.  ;)

I'll be honest.  As soon as I read a lot of the symptoms, I immediately thought NO WAY!  I would know if I had EDS.  I mean... have you read the symptoms???

I mean... I had some of them but my joints didn't dislocate.  Which they actually haven't... to my knowledge... yet.  Most of my subluxations are from tendons snapping out of place and quickly springing back such as those at my ankles and hips.  But, I do have patellas that creepily go completely off to the side and back to the center sometimes when I stand up or straighten my legs while sitting or often while going up stairs.  My hip, too, recently started to slip out (not full dislocation) while driving and I managed to contort in my seat to force it back into place all without even swerving in my lane.  :)  



But back to the days when I didn't realize that some of this stuff was happening as early as last Fall.  It wasn't until I started to see a physical therapist at the end of October 2015 who specialized in TMJD, and blessedly happened to be familiar with treating hypermobile joints, that I began to consider EDS Type III: Hypermobility a possibility.  

PLEASE NOTE THE FOLLOWING IS WHY AWARENESS IS SO IMPORTANT:

Without me mentioning anything about EDS or Hypermobility, I was only in her office for 10 minutes telling her of my medical history before she had me standing up, touching my toes, straightening legs/arms, and pulling fingers/thumbs down.  I score 8/9 on the criteria below.  She looked at me and told me I had joint hypermobility.  She knew the signs.  She knew what to look for.


10 minutes, you guys!  After a lifetime of TMJD, Raynauds, Chronic pain, chronic fatigue, frequent injuries for no reason, mild depression/anxiety, possible fibromyalgia, and seriously believing that I was a hypochondriac.  You see, most doctors have similar reactions to EDS as I did.  They learn about it in medical school and they think, "I would definitely be able to identify that!  It would be so obvious!"  But the symptoms of EDS vary from severe/life threatening to benign but debilitating.  

Don't worry; I have a benign type!  Meaning... it is not life threatening; simply symptomatic.



My physical therapist did not have the authority to diagnose me so I began to work with my Primary Care Physician who was wonderful and freely admitted to not knowing enough to diagnose me.  She then referred me to Genetic Counseling.

My stomach was full of knots as we drove to Rochester.  I'll be honest.  I wanted the diagnoses.  Not because I wanted the syndrome with all of its wonderfulness, but because I wanted the validation.  I wanted to be told, "No, you are not crazy.  There is a reason why your body falls apart... literally...  It is not all in your head."  I was nervous and falling over my words as I attempted to relay to the Genetic Counselor a lifetime of health history with what pieces of my family's medical history I could pull together.  I was terrified when the doctor came in and began asking more specific questions, requesting me to demonstrate some of my "party tricks,"  and asking more probing questions about my parent's health.  I am so grateful I brought Xan with me to fill in a few bits here and there when my brain skipped them.

And then... there it was.  "I will write your Primary and let her know that I think you have EDS Type III: Hypermobility."  And so it begins.  


This syndrome has a lot of complications.  Sometimes it can take a couple tries to stand up if I feel things are out of alignment.  Sometimes I limp on my left leg.  Sometimes on my right.  And it gets really awkward when people notice I've switched the "limp leg" mid stride.  



I will often secure ice packs in place at work with a rubber band and attempt to continue doing my job.  I get a lot of skeptical looks when people sympathetically ask, "What happened?"  "Oh... I opened the door to Team 8 and my wrist sublaxed..."  "Ummm... okay?"  I don't always feel like explaining... as this post has shown... it is complicated.  

But having a name to the problem... an official diagnoses... brings answers.  Answers always come with a world of possibilities and tools.  I now am eligible for handicap parking. I can choose the elevator over stairs and proudly ignore everyone's judgement as I go up/down even just one flight. We might consider renting a wheelchair for traveling where a lot of walking and/or standing is required (NYC anyone???).  I can ask for special accommodations on airplanes such as early boarding.  Someday, maybe I will get a service dog for mobility!  Xan said he would consider it if we got a Great Pyrenees.  See below.  Hook... line... sinker.  It is officially on my bucket list!  

Xan would like to note that this Great Pyrenees is not fully grown...  But so cute!

Yes, life has ups and downs.  But having answers to explain the down times helps to get through them.  Pass on the awareness as it might change someone else's life for the better like it did mine!


3 comments:

  1. Ashley, you are one strong lady! I'm so glad you got an answer and will be able to get the tools you need. Stay strong...you are awesome!!

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  2. I'm so glad you got validation and can go forward from here. I had never heard of EDS before. Thanks for spreading awareness.

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  3. I'm so glad you got validation and can go forward from here. I had never heard of EDS before. Thanks for spreading awareness.

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