Hey everyone, I'm Misty Snelson, I'll be 48 in just a few days, married with 4 boys (all adults now) as well as 2 fur babies. On July 9th 2024 my family doctor gave me the clinical diagnosis of Vascular Elhers Danlow Syndrome, so I went and got the genetic testing done out of pocket and we are currently awaiting the results. Researching the condition, combined with the medical history of my father's family I'm positive it will come back positive for the mutation. 

Vascular EDS is a very rare genetic disorder, fewer than 8,000 people in the country currently have this diagnosis, that is the result of a mutation of one of the collagen genes. It affects all of my connective tissue, all the tissue that connects my intestines and all of my blood vessels. It also comes with a life expectancy of 48-52. I plan on living much longer than that.  Uunfortunately there's a 80% chance of a fatal stroke, aneurysm, aortic dissection, intestinal rupture and Hollow organ rupture. All of which are life threatening events requiring specialists trained to handle my vascular fragility. I'm going to need a MRI, ECG, abdomina ultrasound of my heart and, a CT scan with contrast. 

I'll also need to set up my care team, a vascular surgeon, a cardiologist, immunologist, general surgeon, orthopedic surgeon, geneticist and rheumatologist. All of them will need to be seen at least 2 times by the end of this year, all with the specialists co-pay and, some possibly out of network. My health insurance has a 5K deductible and I'll likely need to travel to Houston to be seen by the only clinical setting practice specializing in VEDS.

We were looking forward to doing so many things in our golden years. Now it looks like I won't be here for them and I need your help to make sure I leave them with an ocean of memorie and not a Mountain of medical bills instead.

Thanks for taking the time to read my story. If you can't donate then please like and share this to help raise awareness to Vascular Elhers Danlow Syndrome 

Fun fact: There are only between 6-8 thousand people in America who have Vascular Elhers Danlow Syndrome. That's a 0.0024% chance.

I should go buy a lottery ticket