My Symptoms Caused by EDS
Blog Post #2
On May 12th of 2021, I was finally diagnosed with Ehlers-Danlos Syndrome. The reason I post this picture instead of one in a hospital bed, doctors’ office or imaging center, is because while I choose to raise awareness & share my difficult journey of getting to this diagnosis, I still choose to find joy in each day. When I look back and reflect, I have endured so much throughout the past 27 years. This exact definition is from Ehlers-Danlos.com, “the Ehlers-Danlos Syndrome (EDS) are a group of hereditary disorders of connective tissue that are varied in the ways they affect the body and in their genefit causes. The underlying concern is the abnormal structure or function of collagen and certain allied connective tissue properties.” I will be sharing more of my journey and some education tips as time continues. If you’re a family member or close friend of someone diagnosed with EDS, please take the time to do research and learn about what he/she is battling on a daily basis. Sometimes it feels so lonely. It’s an important reminder to those you love to know they have a support system who genuinely cares. The first month of my diagnosis was full of emotions. After much time dedicated to research and being in contact with fellow chronic illness warriors on Instagram, I knew Ehlers-Danlos Syndrome is what connected all of the dots. Once I first heard the term, ehlers-danlos.com was an incredible resource. I found the Geneticist who diagnosed me through the EDS Website. At that time, I was glad to find a Geneticist who understood EDS and was educated in regards to the possibility of having a de novo mutation (or the first in the family to have a type of EDS. That time in my life was an extremely overwhelming time for me. To finally have had all of my symptoms and pain make sense, there was so much clarity, but at the same time, so much fear. I first started experiencing alarming symptoms back in elementary school. I was always dizzy and light-headed. Unexplainable joint pain also arose for me as young as my elementary school years. These symptoms continued through the years and other symptoms had become concerning. My symptoms include but are not limited to wide spread joint pain, dizziness, muscle spasms, headaches, faint-like, hard time swallowing, GI symptoms, unexplained weight loss, chronic fatigue, malabsorption, slow motility, stretchy skin, and easy bruising.Comorbidities are other medical conditions that are often seen in people with EDS. The comorbidities I’ve been diagnosed with are: Dysautonomia, MCAS (mast cell activation syndrome), Gastroparesis, Small Fiber Neuropathy, etc. About a month after my diagnosis of hEDS I received my Genetic Test results. I was found to have the TNXB gene, associated with classical-like Ehlers-Danlos Syndrome (clEDS). Another blog post to come regarding clEDS.