Thanks for visiting my page! I’m Beth, a 26 year old living in Somerset. This website was created by my awesome brother, Tom, back in April 2015 to launch one of the most incredible fundraising campaigns. I was suffering with an extremely rare inner ear condition called superior canal dehiscence (SSCD) and was left bed bound with my debilitating symptoms.
Multiple surgeries in the UK failed and my only option left was to go to an SSCD dr in the states. Dr Daniel Lee, at MEEI in Boston, performed my fourth and final ear surgery in July 2015 to repair my SSCD once and for all. My surgery was a success, however, this past year has highlighted that there was STILL something very wrong with my health. I continued to get sicker and sicker. In September 2015 I was readmitted to my local hospital with vomiting and was diagnosed with having severe gastroparesis. I now rely on a PICC line for IV fluids. A few months later I was diagnosed with having POTs. A few weeks after that I was diagnosed with ehler danlos syndrome… what was going on? Why was this happening? I didn’t know what to do and with my symptoms still being so severe and debilitating I continued to look for more answers. I convinced myself that if I began an intense course of vestibular therapy and my balance system could heal then all of these other conditions would go into some kind of ‘remission’. So we booked to return to Boston in July 2016. The day before we left for Boston I had some blood tests done as requested by a new dr… I was slightly skeptical, but two weeks later I tested positive for Lyme disease and multiple coinfections. I had gone untreated for many years and slowly the Lyme disease has been destroying different parts of my body. I hope this website will help raise much needed awareness of this debilitating disease. You can also find information on SSCD here. Please read here for my full story, follow my blog, facebook or instagram 🙂