I was 27 years old when I finally was able to connect the dots with my diagnosis of Ehlers Danlos Syndrome (EDS). EDS is a mutation in the gene for connective tissue, and can affect the body in numerous ways. Although there are six types, the three are most common are: Classical, Hypermobile, and Vascular. It is possible for individuals to have symptoms cross over from the different types but not be diagnosed with it. EDS is inherited from at least one parent (in my case my mom), and every child I may have will have a 50% chance of inheriting the same type, though their symptoms may all be different.
My entire life I have had strange pains, unexplained symptoms, and a body that doesn’t tend to behave “normally.” I always thought that being hypermobile was normal, as family members have also displayed similar traits, but only when it started to become a major problem did I decide to find out what exactly it was that made my joints do this. Several months of reading and discussing my abilities with my chiropractor led me to a geneticist and a positive diagnosis. I have learned that a lot of my body’s odd symptoms and sensations can be apart of my EDS, including IBS, daily pain, PCOS, instability, migraines, temperature intolerance, and much more.
Almost every joint hyperextends, some joints sublux, and some joints I have actually moved completely out of place and back in. Things as simple as pressing a button on the radio can make my fingers bend backwards. Now that I am aware of my hypermobility, I have to concentrate every day on proper posture and range of motion with every activity. In March 2013, a few weeks after my diagnosis, I saw an occupational therapist who helped my get 12 silver rings splints through my insurance. I will need to get more as not all of my finger joints have protection, but I will need to wait until insurance will cover more. I also completed six weeks of physical therapy where I learned better ways to support myself when walking and performing the limited exercise I am able to. My podiatrist had orthotics made to support my flat feet and attempt to reduce the pain from the sinus tarsi syndrome, and I will need to wear ankle braces if I do any major activity. I also have wrist supports that I wear to keep my carpal bones supported. I am unable stay in one position sitting or standing too long, and my activities are becoming more limited as my symptoms get worse. Even walking one mile can leave me in pain for several days.
I’ve always tried to minimize the pain I have been in, but it is starting to become unbearable. It is becoming difficult for me to obtain restful sleep without a sleep aide, and sometimes I can’t walk or use the stairs. My next step will be seeing a rheumatologist to assist with pain management and hopefully confirm if I have fibromyalgia. I have also started a gluten free lifestyle to help decrease some symptoms. I also have high absorption of vitamins, minerals, and medication as do many of those with EDS. Even when taking supplements, I test low on many markers. Medications aren’t always as effective and I need higher doses.
I have been educating all of my friends and family, and even strangers who notice my rings. It’s not always easy to be so young and not be able to do everything that my friend’s can do. I can only walk a fraction of the time and distance that others can, I can’t play sports or be as active as I used to be, and I have to make exceptions for myself in many situations. Some days are better than others, but each day is different. One way we explain how we “feel” to others is the spoon theory ( best explained here: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/).
One of the hardest aspects of EDS is that many doctors are uneducated on the subject and aren’t sure how to treat EDS patients. I’ve had to teach my primary care doctors, who can barely pronounce the full term, the many aspects of EDS. This can make finding appropriate care difficult. Education is important so that more people and doctors become aware of EDS and can diagnose patients at a younger age (even at 27 I am considered a young diagnosis) and obtain proper care. I fight so that one day others won’t have to.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.