#ThisismyEDS part 2

PART 2: Diagnosis with Ehlers-Danlos Syndrome #ThisIsMyEDS



  • How long did diagnosis/self-diagnosis take? When and how were you ultimately diagnosed?
  •  My diagnosis was almost an accident. I had a routine EKG to monitor side effects of a medication I was taking for depression at the time. My EKG showed sinus tachycardia and I was referred to a cardiologist who diagnosed me with POTS. When I was diagnosed with that, I began research and found that I shared many similarities with EDS which is associated with POTS. I also found that i had symptoms of other co-morbities like gastroparesis. I followed up with a cardio as well as a rheumatologist and a GI. I was ultimately diagnosed with EDS by a geneticist in January 2015. However, I never had genetic testing and my type is unknown.
  • What was your emotional reaction when you were diagnosed or self-diagnosed? And now?

I was pretty relieved. I think for a long time i started to wonder if  I was imagining things, If I was exaggerating or not putting the work in. Most of all i was relieved to know I had a community to back me up.

  • When did you first start experiencing symptoms? When did you acknowledge them as symptoms?

I first had symptoms of EDS as a child, starting around age 5. My problems kept piling up after that, including my first set of braces in 4th grade, knee surgery at 12, and tons of ER visits and physical therapy. I didnt ever really acknowledge them as symptoms until after diagnosis. I thought my chronic pain was caused by not committing to PT or previous injuries. I thought my dysautonomia was anxiety or panic attacks.

  • Was there a specific age where your health drastically changed? If so, when was that?

When I was 19 I started having horrible GI issues, I didnt know why. Suddenly everything just changed, not only were my GI issues worse but i started having pain, subluxations, and my dysautonomia was flaring more.  By age 20 I was in a wheelchair full time.

  • What medicines, treatments, and/or devices do you typically need? Do you have access to all your needs? 

AFO’s, Manual chair with power assist, power chair, feeding tube, central line, IV medications (zofran, sailine), neurostimulator, service dog, meds for my heart, asthma, overactive bladder, pain, allergies, catheters, continuous glucose monitor, glucose meter, hearing aids. I get all of these mostly however, many of them I have to pay for myself.

  • How often do you go to the hospital? How comfortable are you in medical environments?

Ive been in the hospital twice this year, I’ve had 3 surgeries, and many more other procedures. After many years of trial and error, I have found my perfect medical team and how to conduct myself around arrogant doctors. I can go to bat for myself and what I need.

  • What kind of resources and support do you use? (are doctors helpful, support groups, personal research, trial and error)

Doctors are somewhat helpful, but i’ve found that the Zebra friends I made, support groups, and my therapist are really the most helpful. I especially want to shout out my intersectional internet support groups. They’re the best people ive met on the internet.




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