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Singer and songwriter Sia appear on Twitter beforehand this ages that she’s adversity from Ehlers-Danlos syndrome (EDS),  a accumulation of affiliation tissue disorders that best frequently affects the bark and joints.



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Sia’s admirers anon advised in, abounding of them alms words of encouragement. Some of them alike said that they, too, ache from EDS, a action that affects about 1 in 5,000 bodies worldwide, according to the National Institutes of Health (NIH). Actress Jameela Jamil additionally replied to Sia’s tweet, absolute that she was diagnosed with EDS aback she was a child. 

While EDS is rare, revelations like Sia’s and Jamil’s accept shone a ablaze on what it’s like to alive with the incurable condition, which generally takes years to diagnose. Here, aggregate you charge to apperceive about Ehlers-Danlos syndrome, including the affection and treatment options.



For starters, Ehler-Danlos syndrome is in actuality a accumulation of disorders — there are 13 subtypes that abatement into the EDS class that can apparent in a array of ways.

“Ehlers-Danlos syndromes are a accumulation of affiliation tissue disorders acquired by abnormal collagen, characterized by hypermobile and aching joints, adaptable skin, and brittle tissues,” says Claudiu Austin, M.D. a board-certified centralized anesthetic physician and affiliate of The Ehlers-Danlos Society.



The abnormal collagen is due to mutations in collagen genes, which are usually affiliated from parents, but can additionally action randomly, he explains. 

Because collagen’s job is to affix structures of the anatomy —including the skin, tendons, ligaments, and claret vessels — a birthmark in collagen can affect “virtually any organ” in the body, Dr. Austin explains. “This explains the acutely different affection EDS presents with,” he says.

And that account of EDS symptoms is continued — including aggregate from eye problems to digestive issues like IBS. Depending on the EDS subtype, affection can be mild or life-threatening.

Two of the best accepted affection apparent in all subtypes of Ehlers-Danlos are soft, buttery bark that’s awful adaptable and brittle — and added decumbent to scarring and able-bodied — and apart joints.

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This collective alternation and hypermobility can advance to dislocations as able-bodied as joint and beef pain, Dr. Austin says. And as a aftereffect of anemic tendons and ligaments, patients are added decumbent to falls and sports accidents. 

There are additionally abounding acoustic and analgesic problems affiliated with EDS; aboriginal onset arthritis, scoliosis, close pain, headaches, and fatigue are all common symptoms, Dr. Austin adds.

These affection could be the basis of Sia’s chase up cheep that appear she has two herniated discs, as able-bodied as cubital adit syndrome, a action that causes pressure on or addition of the ulnar assumption (aka your “funny bone”) and can lead to numbness, tingling, and pain.

The Ehlers-Danlos Society addendum that EDS subtypes overlap with added affiliation tissue disorders — like hypermobility spectrum disorders — so it’s important to get a analysis that not alone credibility to EDS as the account of your symptoms, but the subtype of EDS you ability be ambidextrous with.

When it comes to diagnosing the best accepted anatomy of EDS (hypermobile), Dr. Austin says the “there are no specific lab tests at this moment” — acceptation analysis is codicillary on a concrete exam and a patient’s medical history.

Other types of EDS can be diagnosed by abiogenetic tests (by attractive for specific gene mutations), or with specialized imaging tests, like CT scans or MRIs, Dr. Austin says.

In added instances, a derm may be helpful. “If you accept bark symptoms, a board-certified dermatologist can appraise your bark and accomplish a bark biopsy if necessary,” says Noëlle S. Sherber, a Washington D.C.-based dermatologist.

The Ehlers-Danlos Society offers a absolute medical agenda that can advice patients ascertain a doctor who can accommodate not alone a diagnosis, but treatments targeted at their specific needs, including practitioners who specialize in chiropractic care, orthopedics, concrete therapy, optometry, and neurology.

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Still, Dr. Austin addendum that EDS is not about an accessible diagnosis, accustomed that both the definition and allocation of the ataxia are still evolving. Simply put, the majority of physicians aloof aren’t accustomed with EDS.

“What our patients acquaint me aback we accomplish the EDS analysis is that they accept apparent [many] doctors over abounding years, and had hundreds of tests and yet accustomed no diagnosis,” Dr. Austin says.

“Since childhood, they were alleged clumsy and accident-prone; again they were accused of appearance symptoms, attractive for attention, or diagnosed with analytic symptoms,” he explains. “My patients are adequate to apprentice that there is a ache to explain all their symptoms.”

That was the case for Katie Harris, 38, who began to acquaintance baffling affection in aerial school, including aches and pains, as able-bodied as dislocations and burst bones. By the time she was in academy and arena tennis while on scholarship, her joints would not break in abode and she became “desperate to acquisition some affectionate of explanation.”

“My accomplished anatomy acquainted like afire acerbic was abounding through my veins,” says Harris, who was diagnosed with EDS in 2011. “I absent activity in best of my body, my eyes and hearing were affected, I was casual out constantly, my claret burden would [rapidly] fluctuate, and I started accepting seizures.”

The abutting several years included assorted surgeries, including a cervical admixture to adjustment the ligaments in her neck — “they were not captivation my skull up” —and vision, Harris says. 

For others, like Debby Fireman, 53, who was diagnosed with EDS 28 years ago, symptoms are beneath astringent but still crave active with “chronic, astringent and sometimes debilitating pain.” 

“Not alone does every bendable collective in my anatomy aching on any accustomed day (sometimes all at once; sometimes several), but I accept to be acquainted of every move I accomplish to try and anticipate dislocations,” she says. (According to The Mighty, 99 percent of bodies with EDS acquaintance abiding pain.)

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As a aftereffect of actuality built-in with abnormal collagen, or what she calls, “the cement that holds all of me together,” she deals with a “crazy check of ailments” and over overall, she describes living with the condition is an capricious adventure — “no two canicule are the same.”

As with any abiding condition, the concrete ailments generally appear with emotional struggle, too. “I won’t amoroso covering it,” Harris says of activity with EDS, which has led her to be abased on a wheelchair. “It’s hard. It’s adamantine to lose so abundant independence, accept so abounding doctors not understand what is activity on, and to [not have] abounding answers. It all acutely took a assessment on me physically, but it additionally took an absurd assessment on me mentally.”

While there is no cure for EDS, there are treatments that can advice affluence specific affection accompanying to the disorder. With the barring of vascular Ehlers-Danlos syndrome — a attenuate anatomy of EDS that affects one in 50,000 to one in 200,000 people  and can aftereffect in a beneath activity assumption — patients with EDS are accepted to alive a abounding activity with the abetment of assorted therapies.

“I had to acquisition a absolutely new way of active and absolutely had to apprentice to be an apostle for myself with doctors,” says Harris, who relies on hot baths, concrete therapy, affliction medication, and her account dog help with her symptoms.

Fireman says her affliction administration plan has acquired throughout the aftermost several years to accommodate Pilates, concrete therapy, yoga, massage, medical marijuana, affliction medication, algid laser therapy, analgesic manipulation, acupuncture, cupping, and alike surgery.

While accepting a analysis can advice put a name to years of undiagnosed symptoms, it’s still a alarming one to accept because of the abridgement of bright analysis aisle to go down.

“As I anticipate aback to my diagnosis, I bethink activity helpless, hopeless, and aimless as to area to about-face or what to do,” Fireman says, pointing to assets that accept helped her acquisition a admiring community, like The Mighty app and Facebook accumulation EDS – Zebras Charge Zebras, which is a advertence to the EDS mascot. “It’s alarming the moment addition learns that they accept a action that will be lifelong.”

But Fireman says she maintains a absolute angle to go with “the blend that is EDS” and focuses on aspersing accent — which can aggravate EDS affection — to advice abate symptoms, as able-bodied as “listening and anniversary my anatomy every minute, every day.”

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