She Has Been Battling Ehlers Danlos Syndrome For Her Entire Life And Has Spent The Past Year Bed-Ridden: Now She’s Hoping This Treatment Will Change Her Life

Tampa, Florida. Alicia Jones went from leading an active lifestyle to being bedbound within just a few years.

Since 2018, she has been battling numerous health problems. Now, her husband David Jones has created a GoFundMe to get Alicia the help she deserves.

“My entire life was turned upside down in 2018 after starting a very strenuous job where I developed multiple injuries and conditions,” Alicia wrote, “Then, in 2021, things got really bad.”

At thirty-two years old, she was diagnosed with Ehlers Danlos Syndrome– otherwise known as EDS.

According to the Mayo Clinic, EDS is “a group of inherited disorders that affect your connective tissues– primarily your skin, joints, and blood vessel walls.”

Alicia had experienced many signs of EDS throughout her life, including prominent veins, stretchy skin, flexibility, unusual scars, stretch marks, and excessive fatigue.

The syndrome has slowly enveloped Alicia’s existence, yet she still has not found a helpful doctor.

“I have been mostly bedridden the past year and have desperately sought help from top doctors all over the country,” she explained.

GoFundMe; pictured above is Alicia

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“I’ve been running in circles with specialists who have blown me off or offered very little help– telling me that there is no cure and to just ‘stay strong.'”

Even more recently, Alicia was diagnosed with craniocervical instability. This condition causes her cervical spine to dislocate since the ligaments in her neck are hyper-mobile. Now, she is literally struggling to keep her head up.

“It causes intense pain, neurologic symptoms, and horrible muscle spasms that pull surrounding joints out of place. I can barely hold my own head up anymore,” Alicia said.

After a relentless search, Alicia and David came across the Spero Clinic. Located in Arkansas, the clinic is “a one of a kind facility that helps people with debilitating chronic pain and neurologic conditions such as EDS.”

At the clinic, Alicia would work with a team of specialists for eight hours each day. She is trying to get her life back, one daily task at a time.

“My goal is to regain basic functions such as walking, showering without horrible symptoms, being able to sleep more than a few hours each night, being able to ride in a car without extreme pain and vertigo, and sit upright for more than an hour,” she wrote.

Some other goals that Alicia has include holding conversations, lessening her pain levels overall, and lowering her reliance on pain medication.

And, her most notable hope is that she will be able to leave her sensory sensitivity in the past.

“Light, sound, and vibration sensitivity has taken over my life. I can’t be near any basic sounds such as people talking or dogs barking without suffering horrible symptoms,” Alicia said.

With all of Alicia’s symptoms, you might be wondering how she copes. Well, she resorts to taking hours-long baths each day. She lays in her hot bathtub since it feels like the only way to take her mind off the pain.

“I dream of a day where I could just go walk my dog for fun or give my husband a hug,” she wrote.

Through specialized physical therapy, Alicia has made some progress. Now, though, her only hope is to get to the Spero Clinic.

Unfortunately, the facility does not take insurance and has a hefty price tag. Alicia and David would have to pay three thousand dollars per week, not including moving costs, transportation, apartment rent, food, or health insurance.

The GoFundMe, with a goal of sixty-five thousand dollars, is meant to make Alicia’s move to the Spero Clinic possible.

“I understand this is a massive amount, but every little bit is so helpful. Even just ten dollars can help pay for a meal or gas in the car,” Alicia said.

So far, one hundred and forty-five donors from the community have raised nearly nineteen thousand dollars for Alicia’s cause.

“Wishing you good health and healing. You are in our thoughts and prayers,” wrote John and Sondra Lucente, who donated one hundred dollars.

“Sending you strength and prayers. You’re amazing and have friends and family to support you when you need us,” wrote Christopher Sheedy, who donated two hundred dollars.

Alicia and David were taken aback by the immediate support and posted an update to thank their supporters on December 29.

“We are truly blown away. I can’t thank you all enough. David and I were officially able to secure an apartment in Fayetteville, one mile from the clinic,” Alicia wrote, “Today is our first wedding anniversary, and we are looking forward to our next chapter of healing at the Spero Clinic.”

To follow Alicia’s journey to healing, donate to her cause, or share her story, visit the GoFundMe link here.

Katharina Buczek graduated from Stony Brook University with a degree in Journalism and a minor in Digital Arts. Specializing ... More about Katharina Buczek

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