Being Built Wrong: One Woman’s Struggle with Ehlers-Danlos Syndrome

by Alexa Simmons

The following story was written in 2010 by my daughter Alexa who passed away on October 11 2011 from complications due to Ehlers-Danlos Syndrome (EDS). Most people do not even know that EDS exists and, for that matter, most doctors unfortunately do not understand it and often diagnose it as a psychiatric issue versus a disease/illness. I hope this story increases awareness of EDS and related disorders – perhaps it will inspire people to understand that many diseases are not observable and that they need to be more compassionate towards others.

Genres: Health

12 pages, Kindle Edition

First published August 13, 2014

Reviews

[Sarah · Rating 5 out of 5]

I myself have EDS type 3, and in searching for literature on the subject, I ran across this 10 page story that was short and blunt and tore my heart to shreads. It took me 2 years and several doctors to get the correct diagnoses (yes, plural, as EDS is never alone).
I've had surgery that wasn't necessary in hopes of finding an answer. I had my tubes tied at 24 because we were sure there was something wrong and I'd never find an answer. I have had the nerves severed to my uterus because my doctor could only think it was endometriosis that was causing my pain... When it wasn't, he was out of options. No one suspected a dislocating hip in a 24 year old. I've been pounded with antidepressants because it was considered "all in my head". I had one doctor refuse to keep treating me because he didn't want to admit he couldn't find a reason. Because I don't "look" sick. I've even had family members tell me pain is part of getting older.
This started 2 years ago. I'm only 26.

I'm grieving her, after only knowing her for 10 pages. Because in reality, I know her. I know her story. I know her fight. She's me. I get those stares when I park in a handicap spot, because I'm 26, I get out of my van with my husband and healthy children. People don't realize that I carry a booksack full of bandages and braces, just in case. I know what it's like when a renowned specialist says "there's nothing more I can do for you".
I would recommend this not only to people with EDS, but to families and friends. Let them see the condensed version of what happens in our lives. They may see the day to day, but overall. Overall, let them see.

[Tria · Rating 4 out of 5]

I might be slightly biased, but.

I was one of the many friends with EDS and dysautonomia mentioned by Lexa's dad in the introduction here. Alexa had a great influence on my attitude, and you can feel her positivity even through the text of this piece, whether she's talking about pain or pleasure. I do miss her. As an eBook her essay could have been better edited - but it is very worth reading. Rest in peace, sweet Lexa Lou, wherever you may be.

[Ash · Rating 5 out of 5]

Excellent Book

Alexa Simmons was an exceptionally strong and courageous woman who - thankfully - shares her battle for a diagnosis and proper treatment for Ehlers-Danlos Syndrome. She is a testament to listening to your own body and not ever giving up despite the frustration of the medical community.

Alexa articulates her experience as an Ehlers-Danlos Syndrome patient exceptionally well, while reminding us that just because you cannot SEE a disability, it is no less valid than those that are visible!!

As a fellow 🦓'Zebra'🦓, I can totally relate to the endless roads traveled by many who must learn to be their own advocates when we are not taken seriously by the medical community, and fight for our proper care.

My most sincere condolences to Alexa's family.

[Cadie Holmes · Rating 3 out of 5]

I wish this story was more in depth and better edited.

[Josette Taylor · Rating 4 out of 5]

Tells a blunt, welcomed account of EDS

I have EDS, but the NP won't diagnose me based on HER diagnosing skills...Alexander was right, and I owe it to my kids to get a solid plan. Bless her soul.

[Glitter · Rating 1 out of 5]