Friends rally for Tuolumne County resident,
A Gofundme Campaign recently began for local resident, Lisette Sweetland, who has a rare genetic condition: Ehlers-danlos Syndromes (EDS). Friends organized the campaign to help Lisette with medical and transportation costs to Stanford Medical Center’s EDS Clinic.
Ehlers-danlos Syndromes are largely misunderstood and difficult to diagnose. There are 13 different types of EDS. Lisette has at least two of them: First, “Hypermobile EDS,” which affects the joints and connective tissues of 1-in-20,000 people. Then “Vascular EDS,” which hits 1-in-100,000, weakens blood vessels, disrupts potassium, creates extreme hypertension, resulting in aortic ruptures, often in the intestines or uterus. Both of these conditions have caused Lisette’s deteriorating health.
In 2008, UCSF doctors confirmed her EDS. Lisette got answers about years of mysterious illnesses, but no solutions to this incurable condition. Most doctors don’t understand EDS. For the next 10 years, she kept trying to figure things out, usually going it alone to explain what was at the root of her health problems. In summer 2019, she had several emergency room visits for cardiovascular problems. Her blood pressure registered as high as 260/206. She had confusion and seizure-like tremors, but common controls didn’t help. Friends were concerned that she’d have a heart attack or stroke.
In October, Lisette required emergency gallbladder surgery. Unfortunately things didn’t heal properly because of her connective tissue disorder. When she tried to share information on her condition, the surgeon replied, “Well, you know a lot more about that than I do.” That statement provided little comfort. She feels worse day by day with increasing joint pain. Often multiple joints spontaneously pop out of place, causing excruciating pain. Many days she needs a cane, or can’t move at all.
Until recently, Lisette had no health insurance.
Recently Lisette’s local primary care provider referred her to Stanford Medical Center’s EhlersDanlos Syndromes team. Now she hopes for in-depth treatment for her aortic disorders, gastrointestinal, neurological problems, and liver deterioration, all related to EDS. She’s now traveling to Stanford for regular appointments, tests and possible surgeries. Many trips require overnight stays, which impacts travel costs.
“Lisette’s had more than her share of difficulties, but she’s a caring person and a loving mother,” said Emily Valentine, her high school friend who initiated the Gofundme campaign. “We hope that people recognize the severity of her illness. It’s very important for her to be able to work with Stanford’s EDS specialists.”
Gofundme campaigns allow donors to give any amount to address personal budgets, yet each provides genuine support. To donate, go online to Gofundme.com and type “Lisette Sweetland” into the website’s search bar to get directly to her donation page.