“I’m Kim, @chronic.care, and I have EDS, PoTS, MCAS, Gastroparesis, Intestinal and esophageal dysmotility, and all the related complications. My health issues started as a young child – I remember being 5 and complaining about regurgitating food and migraines with vision loss. I constantly was getting “food poisoning” and my doctor told me it was normal. With time, more symptoms arose – red cheeks, body pains, breathing difficulties, chronic fatigue, scoliosis, dislocations, and worsening digestion problems. By the time I was 13 I had to quit all sports, and I was evaluated for MS at age 14, 19, and 25 because my symptoms had progressed into random muscle weakness, temporary blindness, hemiplegic migraines and what they believed were absent seizures.
In my early 20s I was vomiting and having migraines daily for 3 years. Drs told me that I probably had IBS, disordered eating, anxiety, or was attention seeking. I had to quit working and school because of safety issues with fainting, worsening pain, severe fatigue (sleeping up to 12 hours/day), vomiting blood, and malnutrition. Finally, following a lot of personal research, doctor shopping, and ER visits I began collecting empathetic specialists. I sent off for genetic testing which showed I had multiple EDS-related genes which led to my diagnosis. Since 2019, I have been collecting more EDS-related diagnoses and continue to undergo testing for other conditions to (hopefully) improve my symptoms.
Awareness is SO important because doctors, family and friends get to the point of telling you that you are attention seeking rather than being understanding of your struggles. My entire life I believed others experienced symptoms like I did because I was told they were normal. My experiences have led me to pursue medical school and creating a non-profit (@EDSandCoSupportSociety) for EDS education in Canada so others don’t have to deal with being dismissed like I was.”