Early in 2015 our oldest was diagnosed with a Chiari malformation that was restricting the cerebral spinal fluid from getting to his brain and was pressing on his brain stem. Scary stuff! He had brain surgery in July and is doing much better. It was through my desire to learn more about his condition and receive support from other parents that I first learned about EDS.
In September, a fellow mom in the Facebook support group posted a LOT of links about EDS. That day I decided that I should finally read about this disorder. I was shocked and amazed! I had numerous symptoms, so many that after sharing the links with my hubby we decided to share the information with my doctor. (The one who is a family doctor who studies functional medicine.) Because she believes in continuing to learn and putting her patients first, we were sure she would read the material. We were right! She told us at my visit that she was amazed at how many of the symptoms I have. She did the proper exams (the Brighton scale and the stretchy skin test) and gave me the clinical diagnosis of Hypermobile EDS.
WHAT DOES THAT MEAN????
EDS is a connective tissue disorder that effects the collagen in the body. Collagen is found in every part of our bodies except the nerves. It is the glue that holds everything together. There are different types of EDS and depending on which kind you have depends on which part/s of your body are more severely effected. (I plan to address the other types in a future post.) For the hypermobile type, the joints are very flexible causing the joints to subluxate and dislocate on a daily basis (for many people, multiple times a day). It also causes pain in the joints as well as the muscles that are having to help hold our joints in place. We can use physical therapy to strengthen our muscles, but if the wrong kinds of exercises are done, or in the wrong order, it can cause injury (we injure more easily too) and cause even more problems. So finding a PT who knows about connective tissue disorders and hypermobility is a must. It's also important to find a PT who understands chronic fatigue (which we often have since our joints and muscles tire easily from having to work so hard just to walk, write, type, cook, do all kinds of typical activities). If we work our bodies too hard it can land us in bed for days or cause joint injury.
There are many health issues that are associated with EDS, but more research needs to be done to prove that EDS is a cause. It makes sense though because connective tissue is found throughout the body, every body system can be affected. People with Hypermobile EDS may also have Postural Orthostatic Tachycardia Syndrome (POTS), mitro valve issues with the heart, gastroparesis (slow gastric emptying) IBS, very sensitive skin and stretchy skin that is difficult to suture, mast cell activation disease, vision issues, dysautonomia (which causes all kinds of other issues) Chiari malformation, cervical instability and more. It can be very difficult to be diagnosed with these associated issues because education about EDS typically begins and ends with a short paragraph in a Med school textbook. Because it is deemed a "rare disorder", most doctors don't even think of it as a possibility and there are very few specialists who know much about it as well. Insurance companies can be difficult to work with too in getting the proper tests completed. So, many people with EDS (EDSers) have to travel to be seen by doctors who actually know about the condition and understand the MANY, MANY underlying factors that go into treating someone with Ehlers-Danlos.
It makes daily life a chore sometimes. Something as simple as getting out of bed, eating a meal, taking a shower, or going to sleep can be significantly difficult. My energy level and pain levels change throughout the day. I may seem fine and I'm able to go up and down the stairs and cook and clean perfectly well in the morning, but in the afternoon I can barely move, or my body makes me sick to my stomach or so tired that I have no choice but to lie down. Lying down is a pain too, literally. If I sleep in the wrong position or my bed or pillow don't give me the proper support, or if my joints are just hurting, lying down can cause a tremendous amount of pain; making it nearly impossible to rest or sleep.
Why am I telling you all this? Well, it's not for attention or sympathy. It's for education. EDS is thought of as a rare disease, but the hypermobile type is likely not rare but more likely underdiagnosed. The more people that find out they have this disorder and get diagnosed, the better chance for more research we have. Not everyone ends up disabled or feeling ill all the time. There are different severities, and it hits people at different ages. The treatments that are available, aren't that great. The medications they offer are very strong and for some people cause side effects that are just as bad as the pain they have. And the government is trying to limit our ability to even get those medications anymore. Physical therapy and occupational therapy are great avenues to explore, but they don't work for everyone. And like I stated earlier, you have to have the right kind of physical therapy or else you could get hurt. This is a genetic disorder. Without question each of my children could have it. I want to give my children the opportunity to have a better and brighter future. Getting them diagnosed early on is one good thing that I can give them, but it would be even better if I could give them better treatments and possibly even a cure!
For more information about EDS go to http://ednf.org/node/11