So based on my last post, you may have guessed that I am struggling with some things at the moment. You would be right. I like to believe that I can handle college and a chronic illness with grace, but when the chronic illness starts to rear its ugly head….Yeah, all bets are off…
So lets go into some background with this post. I have Ehlers Danlos Syndrome. It is a connective tissue disease and is considered by some to be rare (affecting 1/5000) and by others is considered to be extremely under-diagnosed. I guess it’s how you look at it. Those with undiagnosed EDS most likely have not had an extreme enough case to warrant a diagnosis. So the next logical quesiton would be: What is an extreme case?
Like most connective tissue disease, Ehlers Danlos Syndrome (EDS) has a wide variety of symptoms. No two cases are the same and to make matters even more complicated, there are multiple types of EDS. The most known and common types are Classical EDS, Hypermobile EDS, and Vascular EDS. While these three are distinct and separate (each being caused by a specific mutation in the DNA) they are known to have symptoms which crossover. Hypermobile EDS, the most common, presents predominantly with extreme joint flexibility. Seriously, my Plan B is to join the circus as a contortionist if I fail out of college. The flexibility isn’t all fun and games, however, but is often accompanied with dislocations and subluxations (partial dislocations). For example, I have dislocated my knees, elbows, fingers, sternum…and have partially dislocated almost every joint you could think of. This means PAIN. It hurts like a MOTHER-F%*&ING-SON-OF-A-B%&$# to put it mildly. The Classical form of EDS presents predominantly with skin symptoms such as easy scarring, busing, tearing…etc. All and every minor scratch will form a horrible ugly scar on me. The scratch doesn’t even have to draw blood. It will eventually widen, become infected, scab over, and scar. Finally, the Vascular form is the BIG one. This one often results in premature death and you know someone has the vascular type when you hear about an EDS patient who died from an aortic dissection in their twenties or a stroke. Vascular symptoms show up in many EDS patients of all types though. Many people develop Postural Orthostatic Tachycardia Syndrome with EDS which results in abnormal heart rates and other unpleasant symptoms (I’m sure we’ll get around to this lovely comorbid disease at another time). You may have noticed that I said each form was distinct and caused by a specific mutation (although, many mutations are still unknown) and yet presented symptoms in myself of all forms. That’s because there are crossovers! Which makes diagnosing a specific type of EDS rather challenging and often a patient will get told something like “You have Hypermobile EDS with Vascular crossover.”
So now that you know the name of my little demon and a little bit about how my demon loves to play with me, you can hopefully begin to understand the rock bottomness. Before, I was one of those undiagnosed EDS patients because it hadn’t presented enough of a problem for me. Lately, however, that has all started to change. Within the last year alone, I have been diagnosed with kyphosis, scoliosis, disc narrowing, disc degeneration and spina bifida occulta. That is a lot for a college student to handle. I’ve been told that I’m extremely flat-footed and require orthotics. I’ve undergone a heart 30-day event monitor which has shown multiple arrhythmia including A-flutter, Atrial tachycardia, and intermittent bundle branch block. I’ve developed chicken pox for a second time due to a medication I am on and am now about to undergo even more testing to see what even more wonderful things my body has in-store for me. It’s exhausting. All that on top of essays and research and homework and classes and I started to crack.
DISCLAIMER: There’s the obvious “I’m not a medical professional and anything said within this blog should not be taken as medical advice. Always speak to your doctor if you are concerned about something. I offer only support and an empathetic friend.” and the “My major in college is NOT English. It is Biology. Please don’t judge my grammar too harshly 😛 “