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Last year my family faced one of the most difficult times in our lives. I was diagnosed with Ehlers-Danlos Syndrome. As difficult as it was to receive the life changing diagnosis, it was also a relief because it took over 10 years of traveling from doctor to doctor searching for answers to my pain. For years I felt as if my body had been taken over by the pain that spread throughout my body. I had always baffled doctors due to the lack of awareness about EDS. After I was diagnosed I felt as if my identity had been stolen. My life, as I knew it, would be different forever. I have always been a very active, athletic person, and would not be able to do the things that I enjoy. I was heartbroken. But nothing could have prepared me for the most devastating news of all--I had a 50% chance of passing the EDS to my boys. Brody was too young to be tested but will be tested in a couple years. Braeden was old enough to be tested and did test positive. He will face challenges in his life and will not be able to play the sports he already shows interest in. Our whole family was crushed. Since I was diagnosed, I had to have three surgeries,one on my "big brain" and two on my spinal cord, and am waiting for my fourth. Because EDS makes you more fragile my recoveries have been more difficult than what is normally expected. Thinking of Braeden going through the struggles that I faced hurts worse than any pain I have had to deal with. Braeden is a very special and unique boy. We believe that Braeden is going to be an inspiration to a lot of people and will have such a positive outlook on life. At 4 years old he has already faced some very adult situations. His ability to adapt with a smile has amazed me.
EDS does not just affect the person who has it, the family and friends go through struggles as well. I have had to rely on others to help me and my family through our life, and people have gone above and beyond what I could have ever dreamt of. Through this whole process I have discovered that I am the luckiest person in the world. I have so many people who have been there for me and my family, and know that we would not make it through without the support. I am truly blessed with all of the people I have in my life. When people ask me if I ever think, “Why me”, I do not even need to think twice about my answer. I do not think about that at all because I know the answer. It’s because it is not just about me. It is about the strength of those who surround me who need to go through this as well. The support of my family and friends is what made me able to keep a positive outlook on life. I am so lucky to see what others rarely have the chance to see—how AMAZING people are. We know that although we will have our struggles, we have the support to help us through anything and will be able to find something positive in just about every situation.
We will do everything that we can to help raise awareness and fundraise to help with the boys' future as well as others who suffer from EDS. Right now many doctors are misinformed about EDS and need to be educated about it. There is minimal research going on, and fundraising needs to be done for research to be possible so one day there will be cure. By donating to the Ehlers-Danlos National Foundation, you will help to make this happen. Every bit helps! Many thanks for your support!
Hope. Dream. Believe.
Hope for a cure.
Dream of the day.
Believe that dreams come true!
What is Ehlers-Danlos Syndrome?
Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles, ligaments, blood vessels and other organs. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue.
Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. Unfortunately these problems are often not screened for by most doctors. When a patient complains of chronic joint pain or frequent headaches, most doctors don't think to ask how flexible you are, or test how stretchy your skin is. Instead most think of the most likely diagnosis, not what else could be happening. Without proper diagnosis EDS has the potential to be fatal. Even with a diagnosis it can be debilitating. There is no cure for EDS.
People with EDS are known as the medical zebras. A zebra disease or disorder is one that is difficult to diagnose, not very well-known and is a rare medical condition. Medical students are taught to diagnose patients based on the condition that’s most likely. This makes sense. Why attempt to diagnose something rare when the answer is right under your nose? The idea is when you hear hoof beats think horses, not zebras. The horses are the likely explanation, and the zebras are less likely.
EDS used to be thought to be rare. However, educated doctors who screen for EDS regularly do not feel it is as rare as it is thought to be. It is just commonly misdiagnosed since many of the symptoms align with other illnesses. Just a few years ago research used to say that only 1 in 15,000 people had EDS. At this time, research statistics of EDS show the prevalence as 1 in 5,000. With so many being misdiagnosed it is very possible that EDS is not as rare as it is thought to be.