LearnEDS.org
EDS/ Ehlers-Danlos Syndromes & HSD/ Hypermobility Spectrum Disorder
Providing Support & Resources about Connective Tissues Disorders:
A Bit About Stacey
Stacey is 44 years old and is married to her husband, Kirk. She says he is a very patient and endearing man who makes her laugh just about every day! They have two intelligent and well-mannered teenage boys, Evan & Adam. Evan is 17 years old and enjoys powerlifting and is fascinated by science! Adam is 14 and is a computer tech/gamer who aspires to become a programmer! They live in Ville Platte with their Australian Shepherd named Indy.
Stacey has worked full time for Schlumberger for the past 15 years, and has held positions in Quotes, Inside Sales and Shipping. When she’s not working, Stacey enjoys camping, gardening, baking and doing crafts.
Stacey is very eager to help bring awareness of EDS & HSD to Louisiana because of her own personal frustration with receiving inadequate healthcare for this disorder.
“Healthcare providers must become educated on these disorders so that correct diagnosis, preventative care and therapies can be provided to people like us.”
“Looking back, I now see that I've had symptoms since childhood, but at the time I didn’t realize that those things were abnormal. The awareness that something was truly wrong with me developed sometime in 2006, during the pregnancy of my second son. My health, stamina, motivation and confidence suffered tremendously after the delivery. I could never get back to my old self, so at 30 years of age, I began my mystery-diagnosis journey. Doctors kept testing and scanning me for autoimmune disorders, but the tests kept coming back clear while my pain and unusual symptoms progressed.”
“In 2015, a rheumatologist advised me that I had Fibromyalgia. I was given the option of pain meds and antidepressants, which I declined. The description of Fibromyalgia compared to my symptoms did not fit and I just knew it was wrong, so I chose to dismiss the diagnosis. I was told to exercise and that there was nothing else to do. So from there on, I kept trying to get back to my old self. The harder I would try to get physically and mentally fit, the worse I would get. It was a never-ending cycle that caused a lot of unnecessary damage. Had I known that I was battling a connective tissue disorder, I could have avoided certain exercises and stretches that ended up causing me more harm than good and I could have been focusing on the correct types of strengthening exercises. I just didn’t know.”
“I continued seeing more doctors and they kept running more tests until March of 2021. A rheumatologist noticed my joint hypermobility while I was fidgeting in the exam room chair. Although he was able to recognize the problem, he wasn’t educated enough on the disorder to go any further with it. I am very grateful that he was able to point me in the right direction, but it is really disheartening to recall how so many doctors repeatedly missed something so important that should have been so simple for them to recognize.” Stacey’s desire is to help EDS Louisiana bring awareness and education throughout our state so that others won’t have to needlessly suffer, without answers, as she has had to.