- RKD
03-23-24
MY EDS STORY
My name is Becca. I was born at 26 weeks as one of multiples, quadruplets with 2 other brothers and 1 sister. For most of my life I have severely struggled with (undiagnosed) autism, high sensory issues, severe OCD, an eating disorder, and multiple kinds of trauma. Over the last several but primarily past year, I have had continuous, debilitating, confusing, and unexplained symptoms that only kept getting worse. These included in order: paralyzing stomach migraines as a child, ruptured blood vessels, easy bleeding and bruising, blood flow insufficiency and blood pooling, Raynaud's, some scoliosis and kyphosis, severe insomnia, severe gastro issues and sudden gut paralysis, fragrance and light sensitivity, chronic fatigue, excruciating migraines and nerve and body pain (laying unable to move or talk, shaking and sweating all over at worst for hours to days at a time), bradycardia and tachycardia, 2 new concussions after ongoing severe sleep deprivation, temperature dysregulation, loss of functioning, body numbness and part paralysis, convulsions with seizure activity and possible FND, extreme nausea, and allergic reactions (constant body and eye burning, itching, hives) to almost any medication and treatment, certain food, and unknown causes...just in the last year not including several years prior, I had 5-7 urgent care and hospital stays, 6-8 different body scans, tons of blood draws and needle sticks, and saw 8 different specialists. Each time I was at the hospital I alternated between collapsing and sobbing from cumulative exhaustion and severe pain. Because of not giving up and a chain of the 3 most outstanding MD's (ER doctor, rheumatologist, geneticist), in between multiple traumas of horrific ones and gaslighting, and a ton of grit and pain that I literally did not think I would survive and almost did not, I finally got a diagnosis of a rare disease and connective tissue disorder with no cure known as H-EDS, and much rarer kind of H-EDS than most people have (The geneticist said it is super rare because I fit all the criteria as well for classical AND vascular but those were negative for gene markers...! So I have all those same symptoms as well as H-EDS...). It was the most life altering and healing moment when the geneticist barely looked at me and immediately said this was without a doubt for sure my diagnosis and that it literally is the cause and connection behind every single thing and all the anxiety disorders I have ever had in my life. Despite being laughed at, mistreated, given dirty looks, shut down, lectured with bias and false evidence, told it was too rare and multiple times I did not have it and that things were all due to my other issues, I knew all along before anyone and fought like hell through hell to get these answers. The pain and allergic reactions were so excruciating physically at multiple points without any help and physical relief that I was suicidal. It was right after this point I finally got a little relief and a diagnosis...diagnosed by a doctor on my 27th birthday on January 17, 2024 and confirmed by a geneticist on Rare Disease Day, February 28, 2024. It has been the most difficult year in my life, and extremely lonely at times, but has proven more of a strong purpose in me to carry on fighting, to spread awareness for others suffering, and has brought me closer to my family and couple amazing warrior friends who I am so grateful for on this journey. The reality is, my condition can cause complications that could become even more debilitating or life-threatening again at any time. So while this will be a process to continue managing for life, I am so grateful for the opportunity I get to have any functioning, feeling relief, or spending time with loved ones and my service dog in training. As long as I am alive I will be a voice for those without one and fight to the death to spread awareness for care, dignity, and proper treatment.