Article is copyrighted to Rachael Ralston under applicable law.
I’m Rachael Ralston- I look like any other 15 year old girl most of the time. But I’m not….
I have Ehlers Danlos Syndrome; I was diagnosed 6 years ago but have had it my whole life. Because of lack of awareness many people go undiagnosed or misdiagnosed. I have suffered problems because of Ehlers Danlos Syndrome my whole life, there is such a lack of awareness and it is time for people with Ehlers Danlos Syndrome to be heard! I am not searching for anybody’s pity I just think that it is time that Ehlers Danlos Syndrome gained some awareness to help those living with it.
Ehlers Danlos affects the connective tissue and collagen which is found in 90% of the body so that means that every part of the body is affected. It means daily dislocations and pain. We have good days and bad days but we never have pain free days.
Ehlers Danlos Syndrome causes-
· Subluxations and Dislocations
· Extreme Pain
· Fatigue
· Easy Bruising
· Abnormal Scarring
· Blood Clotting Problems
· Flexibility
· Inner Organ Problems
· And much, much more
There are 9 different types of Ehlers Danlos Syndrome ranging from mild to life threatening. Vascular (Type 4) is the type that is most life threatening but everyone with Ehlers Danlos no matter what type has an increased risk of life threatening health problems. Because of the slight variations in types no two people with Ehlers Danlos are exactly alike. They may have secondary problems as well and that can make Ehlers Danlos Syndrome very hard to treat.
These things cause a lot of problems not only for the person who has the Ehlers Danlos but the whole family as well. It is a constant struggle to get help to cover medical expenses, get things that will improve quality of life, etc. Most of the time when I go to a new doctor I have to explain what Ehlers Danlos is. When I am put into hospital every time a new nurse comes in I have to explain what Ehlers Danlos is. Should it really be up to the patient to explain the many problems that Ehlers Danlos Syndrome can cause?
Because of the subluxations, dislocations, pain and fatigue I now have to use a wheelchair when I go out, when I am at school etc. I cannot use crutches because they sublux my shoulders, elbows and wrists. Anything can cause a subluxation or dislocation. Mum is now my full time carer, she has to do most things for me as I just can’t do a lot because of the pain and other problems caused by Ehlers Danlos.
At my age you are meant to be gaining your independence whereas I am losing mine. I can’t do the things most of my friends do because of the Ehlers Danlos. I only school on a casual basis because I am in too much pain and am too tired to do it, also my many doctors’ appointments get in the way. Mum home schools me most of the time because of this.
The Ehlers Danlos Syndrome has also caused me to have secondary conditions. Postural Orthostatic Tachycardia which means I faint quite often, have heart palpitations and I cannot be left alone because of this danger. I also have hypothyroid so I cannot control my temperature and when I get sick and get a fever it takes days for it to come down.
Ehlers Danlos Syndrome has taken a lot from me in terms of what I can and can’t do but I still have a zest for life and want to live it to the best of my ability. Awareness can help me and many others like me to do that.
There is no cure for Ehlers Danlos Syndrome and not enough money for research. There is such a lack of awareness that most have never heard of Ehlers Danlos Syndrome. That is what I want to fix- the lack of awareness. Having people UNDERSTAND what Ehlers Danlos Syndrome is can help us in ways you cannot imagine. Please just help to raise awareness all it takes is a little bit of your time to help to raise awareness and it is greatly appreciated by all of the Ehlers Danlos Syndrome community.
As a sidenote, here are some articles regarding the disorder:
