Lisette, is preparing for surgery at Stanford Med Center. Lisette has a rare genetic condition: Ehlers Danlos Syndrome, or EDS. These syndromes impact so much more than joints, especially as the symptoms increase. To begin EDS brings on chronic pain and fatigue. Then steadily overtime the various syndromes begin to weaken and deteriorate all of the body’s connective tissue in muscles, ligaments, joints and internal organs! Her upcoming surgery specifically is for a hernia, one that was caused by the ways that EDS caused another surgery to heal improperly.

EDS is difficult to diagnose. Lisette started showing symptoms in her early teens. As a kid, she had numerous trips to doctors for things that were odd for someone of her age and general health. She even had surgeries early on. But no matter what, something else would “flare up,” bringing more severe pain and fatigue. For a while most of this was tolerable, almost easy to ignore. But the pain and discomfort got worse as she became an adult. 

At 25 Lisette went to UCSF Medical Center to unearth her health mysteries. Was it Chronic Fatigue Syndrome, Fibromyalgia, or was it something else? There a UCSF Medical Specialist put his finger on it. He told Lisette she had largely misunderstood condition, called Ehlers Danlos Syndrome. That eventual diagnosis put a bright light on her health history and all the strange ailments she’d known for ten years. But the diagnosis also forced her to look at a new reality: There is no cure for EDS. There is only the chance of learning ways to survive its multiple symptoms. Some days were good; others were dreadful, and some fit in the middle. She learned to get by and do her best to get things done. After the birth of her son in 2014 her pain and discomfort increased. But like she always does, Lisette did her utmost to be a good mom and a good provider for her family, often working two or three jobs! 

During the last 4 years Lisette’s symptoms have worsened. They've landed her in the hospital several times: Numerous ER trips for extreme cardio-vascular issues, overnight hospitalizations, increasing surgeries, limited mobility, requiring a cane or walker. And all the while local doctors know virtually nothing about EDS, often jumping to the wrong treatment plan. Last year she had emergency gallbladder surgery. Her body could not achieve homeostasis. As she and her advocates tried to explain EDS, the doctor simply said, “Well, you know more about that than I do!” as he left the room. Sadly, most medical professionals have never heard of EDS, and do not know how to deal with its many complications. To make this worse, Lisette had no health insurance! She made too much money to qualify for Medi-Cal, but not enough money to afford to “buy in” to the Healthcare Marketplace of the Affordable Healthcare Act. So, medical bills began to stack up. Eventually in 2020 she lost her job, had trouble getting unemployment, and also had trouble qualifying for disability.

About a year ago one small blessing came. Lisette knew one other woman who had EDS! That woman and her daughter (who also has this genetic disorder) were both undergoing treatment at Stanford Med Center. This new EDS “Pal” helped introduce Lisette to Stanford's EDS Clinic. This has been very reassuring. Stanford is one of the few places in California where treatment of EDS is even understood!

But Stanford is a long drive from her home in Sonora. The overnight travel expenses of each trip costs about $220 (Palo Alto—Sonora/Round Trip). Recently Lisette finally qualified for Medi-Cal, so treatment can proceed. Because of the severity of her EDS, she will be treated by some of the leading EDS specialists: Doctors and surgeons, who have studied EDS in depth.  So Stanford is THE PLACE!

On top of all of this, Lisette’s also exhibiting severe symptoms of Multiple Sclerosis. And now we'll add a scoop of ice cream on top of this dreadful tale: Lisette and her son also have to move in less than one month! She will be most likely be post-surgery, and in no condition to carry out the physical demands of that move!

So, we have one word: HELP!!!!

How can you help? 

Please donate generously to the best of your ability to our GoFundMe Campaign…$5 to $5000, or anything in between! Every little bit will help more than you know. 

-BZ Smith