Can you imagine wanting to eat but your body won’t let you? That’s what happened to a 29-year-old woman from Derby, England. Since birth, Emma Green has had an S-shaped spine caused by a little-known condition called Ehlers-Danlos syndrome.
Complications from surgery to correct her curved spine left her in a wheelchair and unable to tolerate any type of whole food. She felt depressed and hopeless, afraid she would have to spend the rest of her life bedridden and on a liquid diet.
Ehlers-Danlos syndrome (EDS) is a group of genetic connective tissue disorders that results from faulty or reduced amounts of collagen in the body. EDS typically affects a combination of the skin, bones, blood vessels, and/or other organs.
Globally, 1 in 5,000 people of all races and genders is affected. Symptoms can range from mildly loose joints to life-threatening complications. Most have one or more of the following symptoms: abnormally loose joints, stretchy skin, bruising, and unique scar formation. Advanced complications from EDS can include severe pain, aortic dissection, joint dislocations, scoliosis, chronic pain, or early osteoarthritis.
There is no known cure for EDS, and treatment usually consists of monitoring of the body’s systems, physical therapy, occupational therapy, and bracing/casting instruments. Surgery to stabilize joints is not uncommon in advanced cases.
Unfortunately, Green’s complicated condition isn’t unique among people who have lived with EDS for a long time, but her story is riveting.
When she was 15 years old, Green had surgery to correct the curve in her back. Although it was considered a success, the surgery caused some major health issues—she developed artery compressions. These compressions occur when parts of the body restrict blood flow through the vessels, causing thrombosis and hypertension.
In Green’s case, it caused her constant pain and numbness and left her with the inability to absorb nutrients.
She explains, “Over the years I have had to constantly change my diet as I would find some food my body could digest but it would only tolerate it for so long. I was not able to eat any solid food, even liquid food would go straight through me. It’s greatly affected my life as I’ve been constantly on-and-off ill and, for the past 14 years, in and out of
After each meal, her body fought to absorb the nutrients and she would often faint from the struggle. As
When she was at her sickest, Green’s weight dipped to a critical low, 105 pounds. As if her digestive issues weren’t enough to deal with, the arterial compressions advanced and began causing her severe pain in her left leg, groin, and pelvis.
It was so bad that Green had to resort to using a wheelchair to get around. For the past two years, she was often bedridden and depressed, fearing that she would be immobile and have to survive on a liquid diet for the rest of her life.
Then a miraculous silver lining appeared! Three years ago, doctors at Lutheran Hospital in Mettmann, Germany, devised a procedure to help relieve the pressure in Green’s abdomen. They would make a large hole that would allow food to pass and get her intestines enough blood supply that she could absorb nutrients and have normal bowel movements again.
The only problem was that the astronomical cost of £25,000 was not covered by insurance. This did not deter Green, and she set out on a mission to raise money from family and friends. It took her a whole year to gather the full amount, but she did it!
Two years ago she had a surgery that lasted an excruciating 7.5 hours, and she has been recovering brilliantly since. She explains, “I now feel like I can actually breathe more, as all I’d ever known before was a faint feeling. Surgeons have told me it will take up to a year to fully recover but I’m already enjoying my new second chance at life.”
And enjoy it, she is! Green finally ate her first meal since 2015—a bowl of Kellogg’s Rice Krispies—six days after having surgery. She explains, “My tastes before the
operation were completely off but after the
Like many who have Ehlers-Danlos syndrome, Green is passionate about helping and connecting with other people who have the condition. Now that she’s on the path to better health and wellness, Green’s new mission is to help educate people about the complications of EDS and artery compression.
If you have EDS or would like to learn more about it, the first organization to connect with should be the Ehlers-Danlos Society. Their website has a wealth of information and can put you in touch with support groups both in the United States and around the globe.