DAILY LIVING & MOBILITY

Kaitlin's Journey- It took 18 years for me to get diagnosed

Rare Disease & Syndrome

Kaitlin Hollen

The Story

My name is Kaitlin, I'm 18. I've always been "sicker" than everyone else. While other kids were running and playing I was laying inside crying with a migraine, stabbing stomach pains, or severe leg pains. I saw every specialist under the sun, had every test done and couldn't get any answers. They attributed it all to "growing pains". By the time I was 14 I started passing out up to 50 times a day and my joints were popping out left and right, having dislocation after dislocation. So back to the specialists I go. "It's anxiety". It wasn't until I turned 18 and was able to be seen by adult doctors that I would start getting answers.  After 13 years of searching for them with nothing. I was diagnosed with EDS or Ehlers Danlos Syndrome, a rare genetic disease that effects my skin, joints, eyes, hearing, organs, and so much more. I also have Dysautonomia, the umbrella term for the dysfunction of your autonomic nervous system. The two types of Dysautonomia I have are POTS or Postural Orthostatic Tachycardia Syndrome, and OH or Orthostatic Hypotension. I have many other health problems as well such as migraines, IBS, anxiety, heart murmur, fibromyalgia, missing part of my spine, and many more.

Due to the severity of my illnesses and their complexity I am a part time wheelchair user, and some days am bed bound. Being in a wheelchair is not a bad thing, if it wasn't for my wheelchair I wouldn't be able to do all the things I enjoy like attend my senior prom, my graduation, and go out with friends. I was unable to attend my senior year of high school in a traditional school, but completed the year in homebound schooling. But, despite none of my doctors believing me and being in constant pain and being sick my entire life; I am happy to announce that in a few days I will be graduating with my highschool class of 2017 on time with a GPA of 3.6 and I will be attending college in the fall for Business Administration. I run three support groups on Facebook, as well as a page of my own for health updates. My illnesses are a part of me, but they are not all of me. I am a fighter, a photographer, an artist, among many other things; but most importantly I am me, and nothing can ever take that away.

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