The story of Dawnique
Ehlers Danlos syndrome, gastroparesis, mast cell activation syndrome, Pulmonary hypertension, dermatographia
Even though i wasn’t diagnosed until my thirties my problems started when i was an infant. My mom first noticed something was wrong when i was learning how to walk. She would watch me trying to walk across the room and i would constantly roll my ankles and fall. The doctors couldn’t give her an answer just told her to have me wear high top shoes to support my ankles. Then came the knee problems. I remember i was about 5 or 6 and i was playing outside when i started having the worst knee pain. My mom heard me crying and ran outside and i was unable to walk due to the pain. They carried me for a week before the pain settled down enough for me to be able to walk. The doctors answer was i was having growing pains. Then as i got a little older it was arthritis. The diagnosis kept changing. I had always had random injuries even being injured while i slept. I was seen as the clumsy kid. I also dealt with random rashes and itching. I had had a severe case of the epstein barr virus when i was in the 2nd grade to the point where the doctors told my mom due to how severe i had been sick that i would more than likely have issues from it as i aged. So that was seen as the cause of all of the random “issues” i dealt with. As i became an adult the injuries didn’t stop. At 26 i tore the tendons in my groin walking to work, and spent months on crutches. Add in neck and wrist injuries and i was a walking mess.Â
Then one morning in July 2012 i started passing out without warning. And it seemed my body went crazy after that. I dealt with tachycardia. My legs would turn purple. Waves of nausea and dizziness and fatigue plagued me. It took me 2 years to get the diagnosis of POTS. I was then 29. I started treatment to help regulate my heart rate and blood pressure. I was receiving IV fluids but we couldn’t get my pots under control. So my doctor started looking into why i developed pots because i hadn’t been sick or had any happening that could’ve caused it. I literally was ok then i was passing out. That’s when the Ehlers Danlos syndrome hypermobility was discovered.Â
Around that time i was breaking out in hives and rashes and having a lot of digestive problems. I would eat once a day and stay full all day long. There would be times i would vomit 12hours after eating and what i ate that morning would still be in my stomach. I started losing weight and bloating to where i looked pregnant after eating just a few bites. It took about 5yrs but an er doctor noticed i was malnourished and asked about my eating. I told him i had seen a specialist and they couldn’t figure it out. And he recommended they look into gastroparesis. Sure enough i was sent to another specialist and was diagnosed. That was in 2017.
Fast forward to 2019 and i wake up one morning reach for my glasses on my night stand and i feel the worst pain in my neck. I could not get up so i called my mom to tell her i needed to go to the er. Then i rolled off my bed unto to the floor and crawled to unlock my front door so she could help me up. It turns out i had subluxed my cervical spine from c3-t1 and was told i had cervical instability. I had to cut my beautiful long hair short to help reduce the daily pain i have from trying to hold my head up. 2 weeks after doing that i ended up going into acute hypoxemic respiratory failure (not related to the neck injury). I spent a week in the hospital while they tried to figure out why i was not maintaining my oxygen. I was diagnosed with pulmonary hypertension. It’s basically high blood pressure in your lungs.This was in May 2019 and i finished off the year in pulmonary rehab and PT.Â
November 2020 rolls around and i start itching horrendously. It was painful and i couldn’t get it to stop. I noticed any little touch and i would welt up. So i went to my doctor she barely touched me and welts popped up instantly. I was diagnosed with dermatographia. The week before Christmas and I’m still itching and i start to feel wired. Like i drank 5 pots of coffee and i avoid caffeine. Then i start having severe reactions to foods i literally ate the day before. My face would swell. My lips, tongue and throat would swell. I would flush. Have convulsions, itch and my body would burn. I tried to take benadryl and my reaction was a lot worse. I stayed awake the whole night hoping to make it to the next morning. I had tried to go to the er and they were no help. I got down to only being able to eat chicken and white rice. Everything else caused me to react. Even scents. A man walked by me wearing strong cologne and i reacted instantly. I told my doctor i needed to see an allergist/immunologist. Thankfully she listened. I had to wait 2 weeks before i could get in but it was worth it. That doctor was a life saver. He diagnosed me with Mast Cell Activation Syndrome. Im a firm believer in taking pictures and videos of the crazy things my body does as proof. And those along with my medical history helped to point him in the right direction.Â
I have gone through so much. But i refuse to let it stop me. I am no longer able to work but i had gone to school for art and i still make art today. I also run a Facebook page where i share the sense of humor I’ve earned going through all of this with other chronic illness warriors. So though i may not be able to do what i originally planned for my life. I still believe im accomplishing my purpose in life.Â
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