Hi! Welcome to my first attempt at blogging here!
I have a disorder called Ehlers-Danlos Syndrome. This diagnosis has been both a blessing and a curse. How can a diagnosis of a disorder that absolutely stinks be a blessing? Read on...
When I was about 12-years-old, I was climbing the stairs at my house in Galesburg, IL. I was headed to my room, as I really did not want to leave with my mother for a 3-day visit. I was on my way to hide out in my room, when all of a sudden, my knee gave way underneath me. I remember that being the worst pain I had ever felt. I was screaming, I was so confused, and yet I knew that I needed some medical help, right away. Problem was, I didn't get it. My mother thought that it was a ruse to try to stay home, so she scooped me up and put me in the backseat of her car. She had to teach aerobics at the YMCA that night, so I sat in a ton of pain with a dislocated knee at the Y. No one took me seriously, because mom had told them I was acting up. I continued to be unable to walk, and unable to do anything for those days.
When she finally took me home, my father saw that my leg did not look right, and immediately took me into the emergency room. They put my knee back into place (which hurt almost worse than the initial dislocation). I was referred to Dr. Speca, an orthopaedic surgeon, who kept me in a brace and on crutches for months. My parents couldn't afford physical therapy or very many visits, so I only saw a doctor when I threw it out and absolutely needed a dr, and I had a total of 2 physical therapy visits over the next 6 years.
My first knee surgeries came in 2000, when a doctor in Galesburg thought that he could do a simple arthroscopic surgery to stop the dislocations. It was called a lateral release surgery. I had it done on both of my legs. Four months later, I was making homemade pizza in my kitchen, and I went from upright to on the floor in half a second. One of my knees had gone out on me again. And the pizza dough that I had been carrying to the pan went flying, and was glopping its doughy way down the side of my refrigerator.
My husband wanted me to get a referral to the University of Iowa, or to Mayo Clinic. We got the referral, and shortly thereafter, I had a Fulkerson Osteotomy with patellar tendon transplants in each leg(2005). Those surgeries were torture, and I still have complications from those surgeries.
Up through this time (2005 by now), I had no answer of what it was that was causing my knee dislocations and all over pain. I was having other joint problems and pain, but figured that it was completely unrelated to my knees. One of the doctors at the U of Iowa finally thought to refer me to the geneticist to see what could be going on.
The geneticist took one hour to summarize everything that had been going on with me over the past years. She diagnosed me with Ehlers-Danlos Syndrome.
What is EDS? Ehlers-Danlos Syndrome is a connective tissue disorder that is caused by faulty collagen. There is no known cure. It causes weak joints, weak blood vessels, and even weak organs. My daughter has aortic root dialtation. The force of the blood pumping through her heart and into her aorta has made that area dilate, and has made that area weaker. Yearly, she goes in for an echocardiogram to check the status of that. It scares me.
She diagnosed me with the classical form with a severe expression of hypermobility. For so many years, I felt so isolated by my freaky dislocations, pain, and contortionism. All of a sudden, I had a diagnosis. It was a blessing, because no matter where I went in the hospital, there were so many that understood EDS. I didn't feel as isolated, and I ended up finding an entire community of others online that had the same problem as me.
The curse has been to live with this diagnosis. You name it, and I may have thrown it out. Shoulder, knees, fingers, etc. I have silver ring splints for my fingers. Please contact me if you want an original way to get the insurance company to pay for them. I really hate when my ankle gives way on me and rolls out. The EDS also caused ligament weakness that caused my uterus to prolapse, and I had a hysterectomy August 29, 2008. I take Lyrica, diclofenac, Norflex, and Tramadol for pain. I have been going to the Univ. of Iowa for facet injections in my neck, due to cervical disc degeneration, medication changes, knee studies, echocardiograms, headaches, and now for my daughter, who has also been diagnosed with Ehlers-Danlos Syndrome. I am going to a local clinic here for hyalgan injections in my knees for arthritis.
I have 3 more children that could have EDS. We haven't gotten them officially diagnosed yet. Until we have a problem, I really don't want to. I'm afraid that if we were to switch insurances, that it would be looked at as a pre-existing condition, and almost everything could be linked to it, and be denied for payment.
I am on Social Security Disability. It took only 9 weeks for approval, and I did not use an attorney. I guess the letter from the geneticist couldn't be refuted too easily! That, and pages upon pages of medical history with the University of Iowa. Along with asthma, I guess it was enough. The pay on SSD stinks, but it is something at least. I consider myself to be a paid stay-at-home mom. It is only 4 hours a week, but I receive housekeeping from the Illinois Department of Rehabilitation. It keeps me from climbing around trying to dust ceiling fans and carry laundry from the basement, which can potentially be hazardous.
I go in March 20th to have the hardware removed from my right tibia. It is irritating the bone, and hopefully, I will do better with it gone. My daughter is going in for surgery to "install" a cadaver tendon in each knee to tighten her knee up, and try to prevent dislocations. He thinks she can have surgery on Friday, and go back to school the following Monday. I would prefer to do this at a little slower pace, so we are waiting for spring break for one, and summer break for the other.
Thanks for taking the time to read this summary!
Much love,
Angela
