Gen Z woman learns to stand again after agonizing illness was misdiagnosed (2024)

A 21-year-old woman has moved viewers online with her inspiring journey from being in a wheelchair to temporarily walking.

Emma Daniels, known on Instagram as @emmadaniels.x, lost her ability to walk and stand in early 2023 after suffering worsening symptoms for years.

Doctors struggled to work out what was wrong, first misdiagnosing lupus in 2021 before diagnosing Ehlers-Danlos syndrome (EDS), a group of hereditary disorders impacting the connective tissues that lend strength and stability to skin, bones, and organs, in 2022.

Daniels shared a video on September 30 that documented her path to eventually standing up from her wheelchair without additional support. The clip, now viral, has since been viewed more than 845,000 times.

The short video showcases Daniels' progressive triumph over physical adversity, offering joy and hope to viewers online. Her experience, marked by determination and the support of a community interest organization, has sparked conversation about disability and the often misunderstood condition EDS, which affects fewer than 5,000 people in the U.S.

"I lost the ability to walk and stand in early 2023 as my knees were dislocating whenever I was bearing weight or walking," Daniels, who is from the U.K., told Newsweek. "Due to this, from early 2023 to the present day, I am a full-time wheelchair user.

"In July 2024, one of my childhood friends recommended Able2B to me, which is a unique service in the U.K. aimed to improve outcomes for people with disabilities. In the past three months, I have been working on standing independently, and have even taken my first few steps in my ankle foot orthoses—something I never thought I would do again!"

Daniels had experienced worsening symptoms from childhood, including joint pain, fatigue, and dislocations. She said these manifestations were often disregarded or misunderstood by the medical professionals she looked to for help.

"As a child, I was often told 'there is always something wrong with you'," Daniels, who had to give up gymnastics at 11, said. "I would get pains in my knees that would leave me in agony, my parents took me to see the doctor quite a few times about this but they were named 'growing pains'. I later realized that these were partial dislocations."

Gen Z woman learns to stand again after agonizing illness was misdiagnosed (1)

An early life filled with unexplained pains and injuries culminated in her needing a wheelchair by her late teens.

"Unfortunately, like many in my position, I was already in a wheelchair by the time I got correctly diagnosed, due to the lack of awareness about my condition leaving them unable to 'join the dots,'" Daniels said. "At this point, I could walk very short distances independently, but due to the dislocations and joint pain I was suffering, I couldn't work, see my friends or go to medical appointments without using my wheelchair.

"I started physiotherapy in 2021, and despite my best efforts, I had lost the ability to walk and stand just two years later."

Hypermobile Ehlers-Danlos syndrome (hEDS), which Daniels has, involves extreme laxity in the connective tissues, causing frequent dislocations, poor wound healing, and a suite of other debilitating symptoms, including problems with internal organs. The condition is caused by defects in a protein called collagen.

"That has been my experience," Daniels said. "Following my diagnosis with hEDS, I have also been diagnosed with co-morbidities involving my internal organs.

"I suffer frequent dislocations of my knees, hips, shoulders, elbows, and other joints, and some of these dislocations have left me momentarily unable to move or feel my legs below my waist until I get the joint back into place."

Despite these challenges, Daniels has sought to "romanticize her life," and live with a positive attitude.

"My goal has always been to look for something good every day and to make the most of everything," she said. "Throughout all of this, despite how hard it was and is, I have tried to make the most of everything, focusing on what I can do rather than what I can't."

Her journey took a significant turn in August 2023 when she was fitted with custom pre-impregnated carbon fiber ankle foot orthotics by the London Orthotic Consultancy.

These devices provided the stability that lesser, plastic versions could not, allowing Daniels to bear weight without her knees dislocating—something that she had not been able to do for years.

This pivotal moment was followed by her introduction to Able2B through a trusted friend. Founded by consultant orthopedic surgeon Rachael Hutchinson and former boxing champion Jon Thaxton Able2B worked to offer Daniels an empowering alternative to traditional physiotherapy.

"I went along for a trial session and fell in love with it from the get-go," Daniels said.

Their different approach transformed her rehabilitation experience, making physiotherapy sessions something that she, for the very first time, looked forward to and integrated into her daily routine.

'My Goal Is To Show There Is Always Hope'

Over the past few months, Daniels has achieved milestones she previously thought impossible, including standing independently and taking her first steps with her orthotics.

Daniels began sharing snippets of her journey on Instagram in 2022, not anticipating the far-reaching impact her posts would have.

Her recent video set to Birdy's "Keeping Your Head Up," showing her gradual progress through physiotherapy exercises—some in swimming pools—has resonated deeply with her digital audience. The overwhelming response, filled with encouragement and shared stories of similar struggles, has inspired Daniels to continue documenting her journey.

"I woke up the next morning and was shocked to see that I had so many lovely messages encouraging me and saying that my video had inspired them," she said. "I was so amazed that so many people were proud of me."

Her subsequent posts have continued to elicit positive reactions, fostering a supportive online community.

Reflecting on the past months, Daniels expressed deep gratitude for her friends, family, and the online community.

"I am so grateful and overjoyed at the amazing response my videos have received, and I am so thankful to have so many positive and lovely people in my support network, rooting for me from all over the world," she said.

Daniels hopes that opening up about her journey online can highlight what she deems to be a critical need for awareness and understanding around hEDS, and similar conditions.

Her advocacy goes beyond her personal triumph of regaining the ability to stand. The creator aims to help others see that life with a disability can still be full of hope, achievements, and joy—despite what is often shown in film and media.

"My goal is to help other people who may be in a similar position to me, and to remind them that life isn't over just because they are in a wheelchair, and that there is always hope," she said.

"Whether that hope is to walk or run, or move your toes, or to make the most of each day, there is always hope. "

Is there a health issue that's worrying you? Let us know via health@newsweek.com. We can ask experts for advice, and your story could be featured on Newsweek.

Gen Z woman learns to stand again after agonizing illness was misdiagnosed (2024)
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