Fight Like A Zebra

Ehlers-Danlos syndrome is a group of disorders that you inherit. EDS affects your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a very complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body. There are six types of EDS: Classical, Hypermobility, Vascular, Kyphoscoliosis, Arthrochalasia, and Dermatosparaxis. The Hypermobility type affects all of the women in my family, and recently started affecting the males. This form of EDS is the most common, but only affects 1 out of every 15,000 people.

Many of the symptoms that come along with this type of EDS include but aren’t limited to: back pain, double jointedness, easily damaged, bruised, and stretchy skin, easy scarring and pour wound healing, flat feet, increased joint mobility, joint popping, early arthritis, joint dislocation, joint pain, very soft and velvety skin, heart valve problems, and vision problems. Since EDS is so rare, many doctors haven’t heard of it or don’t know how to treat it. This is where the EDS mascot, the zebra, comes from. This is because the medical term for rare or difficult to diagnose diseases is known as a zebra. This comes from the old saying, “When you hear hoof beats behind you, you don’t expect to see a zebra.”

Someone who has EDS lives a very different life than someone without it. These people are often considered lazy because they look fine and healthy but they aren’t able to do everything like a healthy person would be able to. Often times people with EDS get worn out a lot easier and need much more sleep to be able to function throughout the day. Personally I need at least nine to ten hours in order to function throughout the entire day without taking a nap, and sometimes that still isn’t enough. We aren’t able to go on long walks and often spend a lot of time in pain. Others often wonder why these people feel so much pain and sometimes believe that they are faking it in order to get attention.
While I was growing up I was always an outsider. I wasn’t able to play sports like all of the other kids, although I tried. I often times got hurt by doing simple tasks. I once slipped on one step and sprained by ankle. It took a handful of doctors, a bunch of tests, a surgery, and 5 years until my ankle healed. I was even told by one of my doctors that I was lying about my pain just so I could get out of gym class. This is how my family found out that we have Ehler-Danlos syndrome. Another one of the many doctors I saw during this process was geneticist Dr. Ann Muillenburg. She determined that all of the women in the McCarthy family have Hypermobility EDS. Since then, I have had to find ways to cope with living with this disease. My joints pop out on daily basis. I have had to learn to pop them all back into place. Although this usually doesn’t hurt, there are times where I have a lot of pain when I am not able to get them back into place. I’m not able to walk long distances or even shop for too long because of the pain in my legs, ankles and feet. I take a lot of different vitamins to help strengthen my joints as well as drink joint juice. Since then, I have started to notice a slight improvement in the strength of my joints. As we get older, often times we have more pain and our symptoms continually progress. These symptoms can lead to life bound in a wheelchair or in bed.

My mom, Lisa’s, EDS- although very similar to mine- is much worse. Her joints don’t pop out as much as mine, but when they do it causes much more damage. She often has to spend days in bed because her pain is so bad that it’s hard for her to go about her day. She isn’t able to bend over or get down low because she is still healing from a hip surgery 2 years ago; this affects her every day routine in a huge way. She is no longer able to work in her career field due to the large risk of injury again and has a list of work restrictions that limits where she is able to work. My Mom also suffers from sensitivity to hot and cold. Her fingers are usually blue or purple because of her sensitivity. A lot of times she has to where gloves inside in order to keep her hands warm enough when it’s cold out.
 
For my Grandma, Dorothy, EDS affects her much differently. She doesn’t dislocate her joints as much as my Mom and I, but she gets injured a lot more than we do. She recently blew her ankle out by standing up from chair. Her injuries cause a lot of damage and have even put her into a short-term nursing home. Due to our weakened immune system we can get sick very easily. For my Grandma, there are more times than not that she has some sort of infection. In turn, causing her to have to take a lot of pills. We all bruise very easily, but that is much more evident on my Grandma; her arms are covered in bruises. A light pinch can cause a very large bruise on one of us. This happens because our skin is much more sensitive and delicate. The mutations in our connective tissue interact. This causes our tissues, joints, bones, and other parts of the body much weaker. This makes it very easy for our skin to bruise. But, a plus side of this is our skin is very soft. Our velvety skin also helps us with aging. Because our skin is so soft we don’t get as many wrinkles when we age. My mom is a good example of this. People confuse her for my sister all the time and don’t believe that she is really 48 years old.