What it’s Like Living with EDS

One of my many chronic illnesses is Ehlers Danlos Syndrome (EDS). It is often linked to another one of my illnesses, POTS.

What is it?

EDS is an inherited connective tissue disorder that weakens the connective tissue. It is caused by abnormalities in the processing, structure, and production of collagen. The severeness of the condition can range from minor to potentially life threatening. To learn more, go to The Ehlers Danlos Society website.

Types

Hypermobile (hEDS)

  • chronic pain
  • loose joints
  • muscle pain
  • muscle fatigue
  • easy bruising
  • chronic degenerative joint disease

Classic

  • highly elastic, velvety skin
  • loose joints
  • fragile skin
  • benign growths on pressure areas
  • heart valves
  • easy bruising
  • redundant skin folds on eyes

Vascular

  • fragile blood vessels
  • transparent, thin skin
  • thin nose and lips
  • protruding lips
  • heart valve problems
  • collapsed lung
  • sunken cheeks

Is it dangerous?

EDS can be life-threatening, but most patient live a normal lifespan. Vascular EDS can cause a sudden death by causing a arterial rupture. A woman had a life saving surgery in Barcelona to repair her spinal and cranial-cervical instability. Read about her story here. While surgery helped that woman with her EDS, surgery is generally found to not improve it and can sometimes make it worse.

Effect on My Life

.My hEDS was the first condition that gave me symptoms. It was apparent I was hypermobile when I was little. My mom talks about how, when you held my hand, you would look down, and my arm would be twisted around. My grandfather brought it to my mom’s attention, and she asked my pediatrician, who said I was just double-jointed. In second grade, I started feeling pain in my feet when I ran, but I didn’t think of it much. The next year is when it became painful to write. Again, I thought it was normal until I brought it to the attention of my mom. When my sister was diagnosed with our many conditions, my symptoms began to make sense. My mom got me a 504 plan for the fourth grade. A 504 plan is where the school acknowledges and will follow the accommodations you need. As my health declined, my mom got me an IEP, which is more in-depth and more enforceable. The 504 plan gave me a laptop so that I could type instead of writing and let me back out of certain gym activities. Around 5th grade, I started physical therapy (PT), which helped with the back pain I started getting and improving my foot pain. I went to occupational therapy, but they said there was little they could do. I did get measured for a hand glove that was supposed to help the pain, but it didn’t work. I got an adjustable bed for Christmas, which helped my back pain a lot. I continued PT for three more years. Luckily, unlike my sister, I didn’t dislocate my joints, they would become unadjusted but not as painful as fully dislocating it.

Now, my foot pain when running isn’t as bad, but they may also be that my POTS has prevented me from running. The back pain exists, but it is tolerable. My hand pain hasn’t gotten any better, I continued having a computer in school to type, and I can’t write for more than 30 seconds. Based on what I’ve read, my EDS should be stable for now and won’t get worse until I’m older.

I hope EDS becomes more known, so that patients can be properly treated. While EDS has limited what I can do in my life, it is still part of me. I know good can come out of struggles in life.

-Kate

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