Hi there! Thank you for visiting this page and reading my story!
My name is Sylvie Turner, I’m 23 and I am currently trying (and failing) to manage a few rare and complex conditions that are severely impacting and threatening my life. I am currently battling Ehlers-Danlos Syndrome (EDS), Bechets, Gastroparesis, Postural Orthostatic Tachycardia Syndrome (POTS), and Temporal Lobe Epilepsy.
I was diagnosed with Ehlers- Danlos Syndrome when I was 15 years old after years of mysterious injuries. I learned to live with the condition and eventually advocate for myself. However, in March 2020 my symptoms began to worsen. I started experiencing terrible abdominal pain when eating and sudden, substantial weight loss along with overwhelming fatigue.
I was diagnosed with Gastroparesis after a gastric emptying study in May 2020. Different therapies were tried, and a nutritionist was consulted; however, my trouble persisted. I couldn't tolerate food, and I began to deteriorate. In September 2020 a NJ feeding tube (through the nose) was placed, and the following month I had a permanent GJ tube (stoma in abdomen direct to the stomach) placed. During these few months I lost nearly 70lbs and my ability to eat, exercise, and do many of the things that I love due to the severity of the symptoms I now experience.
The sudden increase in severity of symptoms and the rapid progression is extremely concerning as this is not typical of these issues (though they can get worse over time) It was also thought that I may stabilize more after nutrition began, however this has not been shown to be the case. This has left me further deteriorating and in pain, puzzling my specialists.
Due to this (and the rare nature of my diagnoses) I am needing to be seen by a further team of specialists at the Mayo Clinic and will need help with the costs associated with the trip and the appointments. When I would go to Pheonix, I would be there approximately 5-6 days per the request of the clinic. I will be travelling from ID to AZ and will need accomodations near the hospital as well as transportation while there. The total cost for the trip (which will likely be booked on short notice) alone is approximately $1,600 which does not include medical expenses.
I have made my goal higher than more than just the Mayo clinic due to the mounting expenses of my care that is beginning to create a larger burden on my family that I know (and hope desperately otherwise) will continue to mount. I am blessed with health insurance, however the specialist co-pays, medications, therapies, formulas, supplies, and the things becoming needed to keep me alive are becoming quite expensive. Over $5,000 in bills have been sent this year and my insurance resets in January. The unfortunate reality is that my medical financial needs are greater than what I can afford on our own.
I am also supposed to travel to see a pain management specialist in Pocatello, Idaho in January that has knowledge in Ehlers Danlos Syndrome specifically, and will be driving 4 hours one way to see him. However, he is out of network and the costs associated with seeing him will be great. The hope is that his expertise will allow me to have a better quality of life than that of what I currently experience.
That is why I am asking for your assistance. We are very lucky to have jobs, however we are a young family and live on a tight budget plus with the added cost of the medical care needed for myself leaves very little room for error, let alone cross country medical trips! Any sort of gift or donation is appreciated. If you can’t donate, please share! Follow me and my story on Instagram @SweetlySylvie Much love <3
Thank you,
-Sylvie