My story starts many years ago, but I was diagnosed with Primary Sjögren’s syndrome at the age of forty-two. I also have Ehlers-Danlos (classical type) as do my daughters. Ehlers-Danos syndrome (EDS) is an inherited connective tissue disorder. Connective tissue is a mixture of proteins and substances that provide strength and elasticity to the structure of your body. When the connective tissue is defective, as in EDS, it becomes difficult to do every day activities.
It all started when I was young. I had a lot of health and pain issues. I had frequent joint pain in elementary school that was brushed off as “growing pains”. I remember the knee and massive leg pain. I had kidney reflux, which meant frequent urinary tract infections. At eleven years old, I was diagnosed with scoliosis and close to needing a brace at fourteen years old. I also had a lot of stomach issues which can be related to connective tissue disorders. I also had an injury from when I fell on the ice at age twelve. I’m not sure if that was related to EDS or not. I had to sit on a doughnut for four weeks, had a lot of trouble walking, and it was the start of many back problems.
As a teen, the knee pain got worse. I was wearing soft braces, which did nothing. I also started rolling my ankles frequently, which resulted in swelling and ankle sprains. I was told by doctors that I was just trying to seek attention. Nobody really knew how much pain I was in at the time. At the age of fifteen, I was in gymnastics. I did a front forward handspring and that was the end of my gymnastics days. I had hurt my back to the point of not being able to walk.
In adulthood, I noticed how often I got bruised for no reason. Scars wouldn’t heal. I also couldn’t hold Novocaine in my tissues when having dental work. Sometimes it would take up to five shots of Novocaine before I would get even a little numb. I never got completely numb though.
When I had my first child, I suffered a fourth degree tear during labor and also tore into my colon. Now, I have pelvic floor dysfunction, which can also happen as a result of EDS. It can cause severe pain, leaking,and prolapse. At age twenty-four, I dislocated a joint in my foot just by walking in my house and catching my foot on a door jam. It was fully dislocated. I started having more pain, but I got used to it. I went to the emergency room and to my doctor, but nobody caught on that something was wrong or that I had some type of underlying issue.
Finally, when I was forty-two and newly diagnosed with Sjögren’s syndrome and fibromyalgia, I was diagnosed with EDS. By then, I was walking with a cane. I used to be able to walk over three miles, but I couldn’t walk 1/4 of a mile without my cane at that point. When I learned there were others out there and that they were getting results with physical therapy, I wanted to learn more. Frustrated with my situation, I started working with a physical therapist who was very knowledgeable about EDS and she worked with many clients who had the disorder. Within six months I was walking again, without a cane, for up to two miles. I have super flexibility in my SI joint, back, and hips. I wear an SI belt to assist in my walking as well as an ankle brace, braces for my bottom thumb joint, and braces for my fingers. All of these help my daily mobility. If I do not wear them, the pain gets worse.
My daughters have also been diagnosed with this disabling condition. Just a month ago, my primary doctor diagnosed my oldest daughter (21) wwith EDS, based on her flexibility, dislocations, and pain. What made her get diagnosed? She was having hip pain that significantly affected her mobility. At one point she had arrived home, got out of her car slowly, felt severe hip pain and the next thing she knew, she woke up on the pavement, outside of her car. She had passed out from the pain. Now she is in physical therapy and is showing signs of improvement.
My younger daughter (19) was diagnosed when I was and has had many painful days, but she has strengthened her muscles and now moves better. She is also on pain medication, which does help. This condition can require heavy duty pain medications just to be able to get through the day.
I am just happy they were diagnosed much younger than I was. At least they can both get treatments and hopefully avoid using canes and wheelchairs for most, if not all, of their lives. They are also aware of the condition for the benefit of their own children.
This disorder almost stole my mobility from me. But I am determined to do whatever it takes in order to keep a relatively decent amount of mobility for myself, for as long as I can. I plan on taking hikes this year and I walk four times a week, all braced up. I don’t do anything that will be strenuous on my joints (including yoga) and I avoid stress as much as possible. I stay as active as I can, and I give myself a break on bad days. I am aware of the consequences of this disease and I know that I could end up being in a wheelchair, but I no longer let that stop me. My best advice for someone newly diagnosed with EDS is to talk to your doctor now about you can keep the mobility you have now, or even how you can get any back that you may have lost. Take it easy on yourself when the pain gets bad and most of all, don’t give up!
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Christina Griffin is a student teacher, wife, a mother of four, and a grandmother of three. Her diagnosis of severe and life-threatening food allergies came in 2010 and then snowballed into a diagnosis of Sjögren’s syndrome, fibromyalgia, PTSD, anxiety with memory loss, and EDS. Christina spends her free time finding learning activities for her students, studying, watching Gilmore Girls, gardening, walking/hiking, and reading. She also enjoys music (both playing and listening), and writing.
