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Growing Pains? Depression? Injuries? Stress? Arthritis? Fibromyalgia? No, it is called EDS

Posted by: NJ Kids Team - October 26, 2010

Ehlers-Danlos Syndrome

Nadia Vazquez-Bodkin is a very close friend of one of our staff members.  Nadia has Ehlers-Danlos Syndrome which is a disease that gives a person constant pain and skin sensitivity.   This syndrome is not well known and can be misdiagnosed.   Therefore, she wants to help educate people on how to determine if they have Ehlers-Danlos Syndrome and how to elevate some of the pain that comes with this disease from her own personal experiences.   Nadia is currently going for her PHD in medical research so she can find treatments and eventually a cure for this painful disease. 

Here is her story.

Most of the time, I feel like a prisoner in a body that only knows pain. There are days where all I can really do is lie in bed, covered in heating pads, wondering why nothing seems to be working. Other days, the pain medications help me push through as I attempt to be as productive as possible.

I remember as a young child, begging my mom to take the pain in my legs away. All she could do was take me to the hospital only to be told that it was “growing pains”. I have grown to a height of 5’11 and still suffer from this mysterious pain. Once I stopped growing, the doctors claimed the pain was due to injuries and exacerbated by stress. From my freshman year in high school to end of my freshman year in college, I bounced around to different physical therapists, only to come out of each session feeling worse. Keeping up with classes, physical therapy, and the relentless pain in my legs proved to be a challenge for me, but I made it through. Since my “injuries” never seemed to heal, the attending physician told me that I had developed arthritis and that I am just going to have to deal with it. The following semester, I gave up on physical therapy and took the doctor’s advice of “Just deal with it.”  I was eventually diagnosed with Fibromyalgia at the end of my Junior year.

Fibromyalgia has a horrible stigma in the medical field due to the fact that patients "diagnosed" with  Fibromyalgia,  for the most part, appear “healthy". Doctors tried to convince me that I was depressed, stressed, exaggerating my symptoms. Two years after being labeled with Fibromyalgia, a geneticist finally diagnosed me with Ehlers-Danlos Syndrome (EDS) Type 3. One of the key signs of a connective tissue disorder like EDS (other similar disorders include, Marfans, Williams, Stickler, etc.) is soft, velvety skin that bruises easily. This is a classic sign that a patient should be referred to a geneticist for further testing. Having this genetic disorder allows me to be super hyperflexable, causing me to have frequent dislocations and chronic pain. Even with this diagnosis, I am having difficulty finding a medical professional that has even heard of EDS. Doctors need to be able to recognize connective tissue disorders in children in order to ideally avoid, but realistically prolong, the age at which the patient will require joint replacements, experience organ failure (especially heart failure), and/or suffer from severe chronic pain for the rest of their lives. 

It is difficult, but try to put yourself into the shoes of someone that experiences pain 24/7. There is not much and, at times, no relief from sitting, standing, lying down, or any position. All one can do is take a pain killer or slap on a Fentanyl patch and appreciate the potential window of dulled down pain. Please fight the urge to judge others base solely on the individual's appearance. You never know what a stranger is going through in their personal life and no one has the right to judge a “healthy-looking” individual for parking in a handicap space, or taking the elevator rather than climbing the stairs. Just respect the fact that the person is taking the necessary steps to get through the day with a condition that impedes their normal daily functions. All-in-all, "Don't judge a book by its cover."

My goal is to create EDS awareness so that future generations don't have to suffer undiagnosed as I did, and for all those currently undiagnosed, to finally find the real reason for their ailments. Feel free to contact me through http://edsers.com or my YouTube channel http://www.youtube.com/LivingWithEDS.


-Nadia A. Vazquez-Bodkin

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Posted by: NJ Kids Team| October 26, 2010
Subcategories:  Special Need Tips | Kids Health
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