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Spoons, pills and a perfect score: Life with Ehlers-Danlos syndrome

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Over a dozen of Scarlett Eagle's orange prescription bottles are housed in a pink and zebra-striped lunchbox. Eagle has Ehlers-Danlos Syndrome, hypermobility type, which causes chronic pain in the joints. Although she swears it's a coincidence, it's fitting, given that many people with EDS identify themselves as zebras.

Scarlett Eagle is no stranger to pain.

A zebra-striped lunch box with pink accents sits next to her bed. In the bag are a dozen orange prescription bottles that hold the medication that Eagle has to take, just to make her pain manageable.

There’s Tramadol.

“It’s what gets me through the day.”

There’s Amitriptyline, Lyrica, Cyclobenzaprine and extra-strength ibuprofen.

“Pain... pain… pain....pain.”

Metoprolol.

“[It] regulates my heart rate.”

Lastly, there’s short-acting and long-acting Ritalin.

“To counteract the downers.”

On a good day, she’ll take nine pills, not including ones she takes as needed.

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Scarlett Eagle often takes over nine pills a day to help treat symptoms of her Ehlers-Danlos Syndrome, hypermobility type, or hEDS. Symptoms of hEDS include chronic joint pain and dislocation.

The diagnosis

Eagle has Ehlers-Danlos Syndrome hypermobility type, or hEDS. It has no cure.

The condition, which is considered to be a rare disease, causes joint pain and dislocation. Any sort of stress she puts on her body, whether it be walking to class or sitting in a hard chair, causes pain.

She first began experiencing symptoms of severe pain when she was 12 years old, but has always been hypermobile.

As a competitive cheerleader, she was always the most flexible member of her team. At first it seemed cool, she said. She could do the splits with ease, and didn’t have to stretch for hours at home like her other teammates.

One morning while she was in middle school, she woke up with back pain and went to the chiropractor. She thought it was just something she did wrong at cheer practice. The doctors didn’t know what it was, so they told her to take what would turn into dangerous amounts of over-the-counter Tylenol and ibuprofen, and was told to switch off between the two to minimize organ damage.

But the pain never subsided. It only got worse. It spread to her neck and shoulders, before moving to most of her joints. The Tylenol and ibuprofen no longer worked.

Eventually, she found herself sitting in the emergency room with what she described as excruciating pain. The doctors could do nothing except give her pain medicine, because she hadn’t been diagnosed with anything.

And as if being in pain wasn’t bad enough, to make matters worse, the doctors thought she was seeking drugs because she kept coming to the ER with undiagnosed chronic pain. They would ask her parents if she was getting enough attention at home.

“It’s not a good feeling to be told that you’re doing it for attention or making it up,” she said.

As she searched for answers, the visits to the ER continued for nearly five years.

She began to give up hope and went to a pain rehabilitation clinic as a last resort.

She was referred to a physical therapist, who tested her hypermobility and range of motion, ultimately realizing her flexibility was unusual. The therapist sent her to the Mayo Clinic, where she was administered a Beighton Score test.

The test, which is on a nine-point scale, assesses joint hypermobility through the pinky fingers, thumbs, knees, elbows and whether you can place your hands flat on the floor while keeping your knees straight.

Eagle scored a nine out of nine. After visiting more than 10 specialists in the span of four years, she was finally diagnosed with hEDS.

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Scarlett Eagle, junior in genetics, has Ehlers-Danlos Syndrome, hypermobility type, or hEDS. Symptoms of hEDS include chronic joint pain and dislocation, and there is no known cure. Currently, to manage her pain, she uses a federal handicapped parking pass and takes over nine pills a day. She hopes to start a rare disease club on campus next year. 

Counting spoons

Of the 7,000 known rare diseases, only 5 percent have treatments, according to the National Organization for Rare Disorders. hEDS is not unique.

Treatment means treating the symptoms, which translates to lots of pills, Eagle said. Each of the pills she takes has its own side effects, many of them causing fatigue.

As a genetics major, she finds herself constantly weighing the need to sleep — she needs nine hours “just to be functional” — with completing excessive amounts of homework.

Eagle quickly learned how to prioritize her energy, and came across a well-known neologism in the disability community called the Spoon Theory.

Written by Christine Miserandino, the Spoon Theory is used to explain the idea of the reduced amount of energy available for everyday tasks that result from disabilities or chronic illnesses.

Think of everything you do in one day, from brushing your teeth, to walking to the bus stop, to eating your dinner, to taking a test. Everything is assigned to a spoon.

At the beginning of the day, you’re given a certain amount of spoons. Once they’re gone, they’re gone. However, you can borrow from the next day’s ration of spoons, but that, of course, reduces the amount of activities you’re able to do the next day.

In one example, if Eagle has to pull an all-nighter to study for an exam she’s taking the next day, she will have less energy to take the actual exam, because she used that energy just to stay awake.

So what happens when you run out of spoons?

“Pain, mostly.”

And that’s what happened with her organic chemistry final. In fact, she couldn’t finish it because she was in so much pain — she found herself having to massage her joints to the point that she could no longer focus on the test — because she had used up the spoons needed to take the test by pulling an all-nighter the night before.

The Spoon Theory also mentions that able-bodied people essentially have an unlimited amount of spoons.

“The difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to,” the theory reads. “The healthy have the luxury of a life without choices, a gift most people take for granted.”

“With a chronic condition, you wake up every morning and count your spoons. Everything you do, you consciously think, that costs me a spoon,” Eagle said. “If you don’t think about your spoons in the morning, you’ll lose them by noon.”

To help in the conservation of her spoons, Eagle was given a federal handicapped parking pass when she was 16 years old to lessen the distance she has to walk.

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To help ease her symptoms of pain caused by Ehlers-Danlos Syndrome, hypermobility type, Scarlett Eagle uses her federal handicapped parking pass to drive to classes and the library. Eagle is a junior in a genetics, and hopes to go on to study rare diseases.

She mostly uses it to park at Parks Library, where she spends upwards of five hours a day studying.

But because hEDS is an invisible disability, she tends to avoid going to the library during passing periods, because she doesn’t want people to look at her thinking, “Wow, look at this jerk parking in a handicapped spot.”

“Especially on campus I can see [that having a disability is] hard for people to imagine because you look at me and you don’t think that there’s anything wrong with me,” Eagle said.

Planning Rare Disease Day

In addition to being a pre-med student, Eagle has spent the last year organizing an event for Rare Disease Day, which is scheduled at 6 p.m. Wednesday in the Gallery Room of the Memorial Union.

In the weeks leading up to the event, Eagle has had to borrow lots of spoons from days in advance. On Feb. 28, she will likely have exhausted her supply of spoons for the rest of the week.

The event will feature students with 10 different rare conditions. She wants to increase awareness and interest surrounding rare diseases.

Anyone is welcome to attend, but the event is targeted toward future health care professionals. She hopes their practices as physicians will be affected in that they’ll know the impacts of rare diseases.

“I want to try to prevent some of these negative experiences from impacting other people with rare conditions,” Eagle said. “That’s the goal.”

So will having no more spoons be worth it?

She thinks so. 

(1) comment

Paul Dunca

Spinal related issues are highly faced with unbearable pain and can’t handle it with normal medications which we daily allow to. Spine is merely sensitive which can’t take out with medications until a proper treatment yet to be taken. You can take a look at the Chronic care doctor Temple Hills MD if you need someone to help you right away. Lower back pain separates over two types one is acute pain which can find in each individual which occurs commonly for kids to adults at some point due to stress or improper posture.

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