Adventures of an EDS Warrior
Let me just start by saying, Ehlers Danlos Syndrome sucks! For those who aren't familiar with the debilitating disease, I will give you a short summary.
Individuals with Ehlers Danlos Syndrome have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles, ligaments, bones, blood vessels, and other organs. All of this is the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue. Most types of EDS are passed down in a dominant pattern (i.e. if your mom has EDS, there is a 50% chance her offspring will be affected). I suffer from Ehlers Danlos Syndrome Type III- Hypermobility. No, the numbers don't indicate severity. Each person with EDS can present very differently. This, along with the fact that it affects so many different body parts and doctors these days typically focus on only one body part, makes it very difficult to diagnose. The most prominent issues I face on a daily basis include severe widespread chronic pain, joint dislocations, muscle spasms, chronic fatigue, and stomach and intestinal problems. Due to my lax blood vessels (thanks, EDS), I also developed POTS (Postural Orthostatic Tachycardia Syndrome). POTS is a form of dysautonomia, which in short means, the dysfunction of the autonomic nervous system. POTS causes my blood pressure to decrease and heart rate to increase significantly upon positional changes. Symptoms include fainting, dizziness, nausea, tachycardia (fast heartbeat), difficulty with temperature regulation, and blood pooling, just to name a few. Do I sound like the end of one of those medication infomercials? ; ) For anyone who's wondering what in the world blood pooling is, it is not as gross as it sounds. Blood pooling is when my blood collects in my extremities because the blood vessels aren't properly pumping the blood around my body. For those of you who know me, THIS is why my hands always look so lacy (or mottled in medical terms).
I apologize for the long-winded explanation and for all of the medical jargon. This blog definitely will include a good amount of it, but I'll try my hardest to explain things in lamens terms as well. I just thought my first post should give you a little background on my main illnesses so that you have a better idea what I'm talking about later on.
