You may not see it by looking at her, but Hannah Wingert lives with pain every day of her life due to Ehlers-Danlos syndrome.
If you have never heard of Ehlers-Danlos syndrome you are in the majority, which is why Wingert wants to spread the word hoping to help as many people as she can.
Wingert, who is a member of the Fillmore County Journal family as a reporter states, “May is Ehlers-Danlos Syndrome Awareness month and it is especially a big deal this year, as the International EDS Symposium published the new classifications for EDS in the American Journal of Medicinal Genetics in March” of 2017.
“Ehlers-Danlos syndrome is a connective tissue disorder that affects your collagen,” says Wingert. “Your collagen is basically the glue that holds your body together, so when that is faulty nothing in your body works right,” she explains. “You’re basically falling apart from the inside,” she states. This faulty collagen affects several body parts, some of which include skin, muscles and ligaments, and normally causes hypermobility.
“Ehlers-Danlos syndrome is a collection of genetic disorders that affect connective tissue. Because it is a genetic syndrome, it is present at birth, rather than being developed later in life. Symptoms may present at any age,” according to Wingert.
“A parent with EDS has a 50% chance of passing the syndrome on to each of their children,” says Wingert.
Wingert and her husband, Steve, have four children. “So far I am at three out of four and the fourth one might have it,” states Wingert. Neither Wingert’s husband, parents or her four siblings have EDS.
There are many types of EDS as Wingert explains, “The American Medical Journal of Genetics released the new classifications and criteria for EDS on March 15, 2017. Previously, there were thought to be six types of EDS, but the classification has been extended to 13 types. Each affects different areas of the body,” but share some similar symptoms between them.
Hypermobility Ehlers Danlos Syndrome (HEDS), the type that Wingert and three of her children have been diagnosed with, is the most common type and “the only one that does not have a genetic blood test available for diagnosis yet. Because of that, it is clinically diagnosed, usually by a geneticist,” states Wingert.
There is no cure for EDS, but Wingert says, “Diagnosis is still important, as treatment and preventative care can be used to help slow the progression of the disorder” and things such as staying as active as possible and doing the right kind of exercises can help, but too much or the wrong kind of exercising can have the opposite effect.
Wingert was finally diagnosed on March 31, 2016 when she was 30 years old. “It was a huge moment,” she says, after years of feeling like something was just “not right” and getting no answers, she was so relieved to have a definite answer — a diagnosis — even if it was not a good one.
“My whole life I had these weird symptoms,” says Wingert, and was often told the symptoms were in her head. “It’s like you have the flu every single day of your life with constant pain and fatigue and overall just not feeling good,” explains Wingert.
“The problem with EDS is that the symptoms are different in everybody, so it can be really hard to pin that down if you don’t know exactly what to look for,” says Wingert, and there is so much more that needs to be learned about EDS by the medical community.
“Very few doctors know about it,” states Wingert as she says, “I have had doctors ask how to spell it and have to Google it while I was in the room — that is how little is known about this disease” and the number of people suffering with it.
“There is not enough research done on the disease because it is still listed as a ‘rare’ disease, even though it’s not rare — it’s just rarely diagnosed,” states Wingert.
“One of the first things they look at for EDS is hypermobility,” states Wingert, and pain in the legs which is most often misdiagnosed as “growing pains” by many doctors.
Some of the conditions associated with EDS include Postural Orthostatic Tachycardia Syndrome (POTS), Gastroesophageal Reflux Disease (GERD), IBD, Dysautonomia, scoliosis, Raynaud’s Syndrome, Mast Cell Activation Syndrome, MCAS, depression, arthritis, Chiari Malformation, TMJ, and Eosinophilic Esophagitis (EoE) and asthma.
According to Wingert, there are many ways that those suffering with EDS are affected, saying, “The list is long, but the most common ways are joint hypermobility and pain, easy bruising and scarring, joint dislocations and subluxations, digestive issues, hypotonia, muscle spasms, chronic fatigue, chronic pain, sleep issues, clumsiness, flat feet, heart issues, migraines, and much more,” and many of those with EDS rely on mobility devices such as wheelchairs, walkers and canes. Wingert just recently acquired a cane for assistance when needed.
Wingert says her EDS has been “progressing very quickly” the last couple years and “there is never a moment without pain”