The Realities of Life With Ehlers-Danlos Syndrome


It wasn’t that long ago, about four years, that I found out I have a mood disorder. The medications, they said, could affect my thyroid and kidneys. I was also told that due to autoimmune disease my kidneys and other organs, such as my heart, could be affected. Another troubling diagnosis came a few months later. I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS).

Again, I was told my heart could be affected. I was all of 19 years old at the time. It was overwhelming, I laughed about it, which seems to be the norm when my health gets to be too overwhelming.

Ehlers-Danlos syndrome has been, to this day, the hardest of all my diagnoses for me to deal with. Why? Because I was told it could affect my heart, but not once did my doctor, who specializes in EDS, tell me about everything else it can do to my body. Perhaps this is because he didn’t know, or maybe because he was focused on my other symptoms. He also told me to wait to see a geneticist until I’m ready to have children. I’m still not ready for that, nor do I think I’ll ever be ready.

Now is the time when it starts coming out of the closet. I act strong, I really do, and I try to be just as strong, but it’s overwhelming. I put on a brave face for the world, but inside is another story.

I can’t sleep at night, scared of the endless possibilities and what these current revelations mean for me. Due to spinal dislocations I was told I could become paralyzed. I’ve become comfortable with the idea of needing a wheelchair or feeding tubes because I have also been faced with the possibility of needing one someday. I have actually had to research feeding tubes. J and JG feeding tubes that would bypass my stomach and go into my intestines.

I know these are all possible eventualities. Possible as in they may or may not happen but the fear and pain is still very much real.

The slightest movement is painful sometimes. I can’t even move an inch without pain in my back. Spinal dislocations. Sometimes it feels as though my neck and spine are unstable. This is a reality for some with Ehlers-Danlos syndrome. It’s my reality.

This week my neurologist reviewed the recent MRI results with me. The bones around my cerebellum are small, which is putting pressure on my cerebellum. Now I’m waiting to see a neurosurgeon for further evaluation. A decompression surgery was mentioned as a possibility for treatment. Surgery? I’m not even scared of surgery anymore! It used to be my biggest fear.

Last month I was informed that I have three leaking heart valves. Tricuspid wasn’t a surprise since I actually found out about that a couple years ago. Now it’s the mitral and pulmonary valves as well. There is also a hole in my heart but that doesn’t seem to be connected to EDS.

A few months ago I was officially diagnosed with gastroparesis after six long years of struggling with symptoms. The pain got so bad at times I would wake up in the middle of the night crying. Praying for relief.

The nausea got bad as well. It was 24/7. I still get it. I also get bloating enough that I look pregnant after eating. I’m on a restricted diet just to help with the symptoms. Sometimes I lose weight, other times I gain weight. Sometimes I stay around the same. Which has, on more than one occasion, resulted in clothes shopping because my clothes no longer fit me and are uncomfortable.

However, I have also become severely weak from the inability to eat or drink much of anything. Malnourishment and severe dehydration have been visitors of mine. So, I guess you could say it’s been hard. This is listed as something caused by EDS.

I have also recently been struggling with dysautonomia symptoms. One doctor is convinced I have dysautonomia but my cardiologist doesn’t see it that way, so no official dysautonomia diagnosis yet. However, I do get the symptoms. My blood pressure is low and heart rate high. My blood pressure
drops when I lay down resulting in “blackout” episodes. Standing or walking around is hard at times. I have what they call exercise intolerance.

That’s just the tip of the iceberg for me. The joints in my toes keep dislocating while walking, so do my knees and hips. Plus, My balance is off and muscles are weak so my knees will give out on me while walking. It’s really frustrating. Yet another reason EDS can eventually put me in a wheelchair.

I don’t say this so you can feel sorry for me, and I hope this isn’t taken as me complaining because I’m really not. This is so others know, EDS is serious, or it can be. It is a very real, very debilitating illness. One that needs more awareness.

My life is far from normal. I’m unable to do the things I once loved to do. I can’t eat my favorite foods, in fact most of the time I can barely eat. Like I said, my diet is very restricted. I can’t hike, ice skate, do Taekwondo, or even yoga. Sometimes walks are even out of the question due to the exercise intolerance, joint dislocations, and muscle weakness.

My life is still beautiful, EDS and all. I’m a beautiful butterfly, zebra warrior. Nothing is going to keep me down for long because I’m not going down without a fight! I hope you stay with me, and fight. We can make it together.

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