Bendy but not Broken

Imagine not being able to pick up a pencil without your fingers hurting. Sending a letter, doing a crossword puzzle, these are just a few of the simple tasks that trigger pain in your joints on a regular basis. This is my reality. This pain often is felt from head to toe and can be debilitating. What’s more, Ehlers Danlos also causes especially thin skin that can bruise and tear easily, leading to wounds that have trouble healing.

Those  of us lucky enough to have with Ehlers Danlos, we have an inherited, genetic defect in our connective tissue, making our skin fragile and our joints unusually flexible. According to the Ehlers-Danlos National Foundation (EDNF), an international nonprofit dedicated to supporting people living with the condition, between 1 in 2,500 and 1 in 5,000 individuals are diagnosed with some form of this syndrome.

There are now 13 types of Ehlers Danlos, with the Vascular Type being the most serious due to the possibility of arterial or organ rupture. I have a good friend with vascular EDS and I constantly worry about her. She just celebrated her 40th birthday. This is a huge accomplishment because people with vEDS don’t live as long as with other types. Symptoms common to all types of Ehlers Danlos can vary in severity, but most often include 

  • Overly flexible joints: Because the connective tissue that holds joints together is looser, joints can move far past the normal range of motion. Small joints are affected more than large joints. Unstable joints are problematic as they can result in more sprains, dislocations or hyperextensions. This leads to joint replacements, which are risky in itself. I had 2 total joint replacements before the age of 46 and a total of 12 surgeries because of infections, failed corrective surgery, sinus surgery etc. Because of being flexible, I easily dislocate or sublux. Subluxations and dislocations can be equally painful.
  • Subluxation: Usually goes back into place on its own. 
  • Dislocation: Must be put back manually. Although many people with EDS can pop their dislocations back into joint on their own – just like me. 
    • You can have a partial dislocation (e.g. ribs, often either front or back). 
  • Stretchy skin: Weakened connective tissue allows the skin to stretch much more than usual. The skin might also feel exceptionally soft and velvety. My skin is not only stretchy, but also transparent in places. It’s weird to see. I used to love it when I was told that my skin was silky and soft. Now that I know that I have EDS, and more of my skin is stretchy, silky and soft, I’m not sure how much of a compliment it truly is.  Being I have an invisible illness, I don’t take it personally but rather think of it that I don’t have to use lotion and creams to keep my skin looking like this. It’s all natural! 
  • Fragile skin: Damaged skin often doesn’t heal well. For example, the stitches used to close a wound often will tear out and leave a gaping scar. These scars may look thin and crinkly. I have plenty of these and have actually seen a cosmetic surgeon to see if there is anyway to fix these scars. I have them all over my body but my the main ones are on my knees and hip. I also pick my skin because of nerves and anxiety. My skin breaks so easily, I have “pick” scars all over my arms. I could probably explain my road map as to IV marks and blood draw marks as well. 
  • Fatty lumps at pressure points: These small, harmless growths can occur around the knees or elbows and may show up on X-rays. I have these on my feet as well that show up around my heels when I have been standing to long. The ones around surgical points (knees and hip), they are big and were concerning at first. They just add to the uniqueness of who I am. Being a model is not any part of my future. 

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