My name is Dani. At 22 years old, I was diagnosed with a rare type of Ehlers-Danlos syndrome (EDS) called vascular Ehlers-Danlos Syndrome (vEDS), which used to be known as type IV.
VEDS is genetic (I was born with it!), and it’s caused by a mutation in the gene that makes collagen III (the glue that keeps things together in the body). VEDS can negatively affect the arteries, hollow organs, skin, and lungs. The risk of life-threatening events increases with age, so early diagnosis is important!
Unfortunately for me, it took what we call a “major health complication” in order to get diagnosed. Getting COVID was actually one of the many things that helped get me diagnosed, oddly enough! But as a kid, my early symptoms were easy bruising, easy bleeding, and just overall “fragility.” I got hurt A LOT. Thankfully, I never had any life-threatening injuries as a child. With that said, I now often wonder, if I had a really serious accident back then, how bad the outcome would’ve been.
My diagnosis was bittersweet. It’s an answer, but the answer is a rare disorder that comes with caution tape because of the risks. I struggled pretty hard after receiving my diagnosis, even refusing medical intervention at one point. However, I now have a great team of specialists! I try to remind myself and others with rare illnesses that we are VALID in anything that we feel, but it feels better to make the most of things on the days that we can. Even more so when it raises awareness to bring answers to someone out there experiencing similar symptoms, hopefully, comfort to someone who lost a loved one to vEDS, and life-saving research in the future.
Follow Dani’s journey at @the.dani.adventure
