It’s been a tough few years for Luling resident Rebecca Blanchard, 29, a mother of two who was formally diagnosed with a relatively unheard of illness known as Ehlers-Danlos syndrome (EDS) two years ago.
EDS is a disorder that affects connective tissues throughout the body supporting the skin, bones, blood vessels and numerous other organs and tissues. The illness is commonly misdiagnosed by doctors, who often mistake it for other illnesses such as fibromyalgia, depression or chronic fatigue syndrome.
Being misdiagnosed is something Blanchard herself initially faced, before finally finding a doctor experienced with the illness. Oddly enough, her doctor noticed Blanchard was ‘double-jointed’ or having highly flexible joints – a trait many EDS patients often have. It was a marker her doctor had seen before which allowed him to help pinpoint Blanchard’s disorder.
“Two years ago when I found what [my illness was], that’s when I got my treatment plan,” Blanchard said. “I now have a team of about 20 doctors that treat it.”
According to MedlinePlus.gov, an estimated 1 in 5,000 individuals worldwide are affected with Ehlers-Danlos syndrome, with 13 different variations of the illness that have been medically recognized. The illness is more prevalent in women, with about 70 percent of EDS-diagnosed patients being female.
“It’s a very costly disorder,” Blanchard said. “I get MRIs probably once a month to every two months because I have torn ligaments all throughout my body, and arthritis throughout my body.”
Blanchard has two surgeries lined up later this year, the first surgery needed to treat an issue in her back. Complications sometimes lead to more complications with her EDS illness, which is the reason she has so many specialist doctors monitoring different systems in her body. At just 29 years old, Blanchard now requires mobility assisting devices such as a wheelchair for long distance walking, and walkers or crutches to assist her with walking short distances.
The balance issues were a recent complication following an brain surgery earlier this year. Brain surgery, Blanchard said, was required in order to address a condition she developed as a result of her EDS called trigeminal neuralgia, an arterial issue that threatened to cause a brain aneurysm, and had begun causing facial spasms, loss of hearing and balance and other complications.
As her brain surgery approached, her Luling friend and neighbor Ashley Martin saw the medical struggles Blanchard was experiencing, and organized a raffle fundraiser in May for Blanchard’s benefit.
“I can’t tell you how many people in this community, businesses, ended up donating,” Blanchard said of the recent raffle. “Tons of businesses ended up donating items towards the raffle basket, so that we could raffle [the donated items] off.”
The raffle garnered response from numerous members of the local community, that for Blanchard was an overwhelming sign of support from neighbors and friends.
“People that I hadn’t talked to in years, teachers – it was unreal the amount of people that donated,” Blanchard said.
Throughout her struggles, Blanchard said her life has begun to improve somewhat with EDS-focused medical care and support. Tulane recently opened an EDS-specialty clinic, which she said she was fortunate to become a patient of; the clinic currently has a year-long waiting list. She also has reached out to EDS-focused communities like the Ehler-Danlos Society where she says she has found advocates, compassion and support.
For more information on the EDS illness, visit the Ehler-Danlos Society at www.ehlers-danlos.com. For those interested in helping the Blanchard family, an online GoFundMe fundraiser account has recently been established in Rebecca Blanchard’s name to help offset her medical costs.
Be the first to comment