This is the type of EDS that I have. I was happy to have an answer for all the 30 years of my parents and I wondering why I was different; I could do some cool party tricks bending my fingers backwards or pulling the skin on my elbow out to freak people out, my skin, extremely pale, almost translucent, and extremely baby soft. We already knew to deal with things a little differently even though people would not listen; no tape on skin, stitches in for longer, bruising and scarring easy… but after my second child, things got worse.
People tell you not to push a vacuum or do strenuous work after having a baby. I thought I could go bowling a month after having a baby. I was wrong. I went right back into the hospital in excruciating pain. Doctors’ diagnosis went from ovarian cyst to cancer in trying to rule out options; a large mass in lower abdomen. For 6 months, we did testing and waited. I wanted to bond with my new baby, spend time with my first especially since I was enjoying homeschooling, so I did what I could from my bed. The first month, I could not even get out of bed without strong medication the pain was so intense. I weened myself off of the pain meds because I wanted to nurse, so I dealt with the pain to bond with the baby. It finally started going a away on it’s own. I remember specifically asking one of the 3 specialists that I saw, “My scars have a weird blood-blister thing that happens when I bump them, could this be related?” But nobody had any answers for me. After it went away, they stated that it was a hematoma with no other explanation, although, my primary doctor at the time suspected abuse.
6 months after, I was back to working with the elderly, homeschooling, cleaning, nursing, and feeling like I was back to normal. Then, I tore a meniscus in my right knee from walking a resident to the bathroom. Again, the doctor told me that it wasn’t that bad and I should be up, soon. It took 6 months more to work myself up to getting out of bed and back to work an hour at a time. All I knew is that my body took longer to heal and that I was fragile. A good friend of mine was studying to be an LPN when she ran across Ehlers-Danlos Syndrome and suggested that this is what I had. I refused the label and told my mom about it. She researched it and agreed that I needed to see if this was my diagnosis. By now, I was pregnant with my third and worried about all the things I was passing on. My mom did most of the research and gave me names, I asked my primary to send me to particular specialists, and we finally found one that could diagnose me. Not only was I blessed that someone understood what it was and could diagnose me, but had Classical EDS, as well. He was very encouraging.
4 years later, I’m realizing that there are so many more issues that go along with EDS than just our joints popping out of place, easy injuries, and slower healing. Now, I know that the severe allergies and digestive problems are related. I also was made aware of how being tired a lot and brain fog aren’t just from getting older, but are all related. I’m currently dealing with other pain up my spine that is now being tested.
Again, for me, I don’t think of this as debilitating. To me, it is a fight to find answers for the symptoms. I’m finding out how to heal the digestive system which affects even mood behaviors and the immune system. I’ve learned how to heal infections, cuts, and bruises fast, and am looking for more. Sometimes, it is frustrating to have to wear braces, go to physical therapy again, or find out what new symptom THIS is, but it’s okay. I’m broken and God can help me through this life. I have a wonderful support system of family and friends around me. I hope to provide answers for my children and help them as they deal with it… and get the information out there.
Classical Ehlers-Danlos Syndrome used to be called Type I and Type II. At least 50% of individuals with Classic EDS have an identifiable mutation in COL5A1 or COL5A2, the genes encoding type V collagen; however, this number may be an underestimate, since no prospective molecular studies of COL5A1 and COL5A2 have been performed in a clinically well-defined group. The skin is smooth, velvety to the touch, hyper-elastic, and fragile. The skin splits easy, wound healing is delayed, and scars widen over time. Just like other EDS symptoms, they include joint hypermobility (double-jointed) or dislocations (popping out of place), muscle pain, and easy bruising. All Types of EDS may also include Digestive issues, Spine issues, or Vascular EDS issues and need to be aware and checked on a regular basis.
Please tell someone about EDS because they may not have the answers to why they are fragile. They may need you. because I am definitely not the only one…
CLICK HERE TO WATCH Kristin Means talk about her life with Classical EDS. She is married and has two boys who also show signs of it. She used to love to play sports as a kid which resulted in multiple injuries. She also used to be a school teacher.
CLICK HERE TO LEARN ABOUT Ashley Coats. She is inspiring talking about how she deals with Classical EDS and wants to help others naturally.
CLICK HERE TO LEARN ABOUT Dr. Mark Lavalee who diagnosed me with EDS and also has it himself. He is an enthusiastic person who also doesn’t let EDS symptoms stop him and inspires others.
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