A Shared Rare Condition and a Shared Dream: How Ehlers-Danlos Syndrome Connected Miss America and Ms. Wheelchair Virginia

Ryan Kress was crowned Ms. Wheelchair Virginia 2020 and Camille Schrier was crowned Miss America 2020.

Besides their titles, what brings these two individuals together is their medical diagnosis with the rare condition called Ehlers-Danlos syndrome (EDS). These patient advocates were recently able to meet (virtually) to discuss their experiences with EDS.

There are 13 subtypes of EDS, but each form has some impact on the connective tissues of the body such as within the skin, blood vessels, eyes, and joints. Each individual with the condition experiences it differently as there is a wide range of symptoms and severity of disease.   

Here is a glimpse into the experiences and advocacy efforts of these two public figures.

About Ryan

Ryan is a 28 year old RN who works as a case manager in a hospital. She previously was an ER nurse, but had to give up that position after she started using a wheelchair full time. Ryan explained that her chair couldn’t fit in all of the hospital rooms on the ER floor. Not even a hospital, who cares for individuals with disabilities, was accessible enough for Ryan to do her job.

She explains that having to leave her dream job is when things really set in for her. The lack of accessibility of the world was impacting her more than her disability itself. She decided that she wanted to be a voice for the disability community and people like herself who are trying to navigate a world that doesn’t often think about people with chronic conditions. 

She decided to create an Instagram page to share her experience and spread awareness of and education for disability. As Ryan began to share her story she was flooded with messages from people connecting with her diagnosis. Fellow EDS patients who had never met someone else with the condition would message her sharing their own experiences. Ryan realized she could use this platform to spread both knowledge and encouragement to the disability community and beyond.

Additionally, it helped her to accept her new reality.

Her Diagnosis

Ryan thought she was a healthy kid growing up. Now, looking back, she realized she had symptoms all along. But for her, it was just her normal. She was accident prone and frequently got injured. She could pop out her shoulders like a party trick. She also did ballet and was extremely flexible.

At age 16, she was at an appointment with her sister when the doctor noticed her own mobility and asked her if she had heard of EDS. At that point, Ryan hadn’t. But soon, she would know practically everything there is to know about this condition.

Ryan had every symptom. She was told she would likely need to be in a wheelchair by the time she was 20. Sure enough, she began to have progressively worse symptoms. In the next few years Ryan needed:

  • Surgeries to stabilize her joints
  • Braces
  • A cane
  • Forearm crutches
  • Surgery on her intestines

She also has a heart murmur because she has a heart valve that is too flexible. Due to this, she has echocardiograms regularly to check her heart. She also deals with sleep issues related to the condition.

As Ms. Wheelchair Virginia, she has been given a new platform to share her voice with the public. She has spoken to Girl Scout groups, women’s conferences, the Capable Campaign, and more. She plans to continue this advocacy in 2021.

About Camille  

Camille’s EDS is much less visible than Ryan’s, but it is just as real. She was diagnosed at age 11. Unlike Ryan, she was born with a visible complication. Her hips had been dislocated. She faced surgery, wearing braces, shoulder dislocation, joint pain, scoliosis, and teeth crowding.

The scoliosis diagnosis is what lead to her EDS diagnosis. The doctor examining her realized that her joints were hyper mobile and there was more going on than issues with her spine. She was told all of the disparate symptoms she had been experiencing were actually interconnected.

Camille faces chronic fatigue, gastrointestinal issues, brain fog, and eye issues. She is at risk for the retina disconnecting from the eye and is regularly checked. Due to her fatigue, she takes daily naps and must plan her breaks in the day. Energy levels is something that was of particular worry to Camille as she ran for Miss America.

During the competition she fell multiple times and faced extreme fatigue. Thoughts entered her mind of whether she could handle the job if she won the competition.

But Camille has done just fine since winning her title. She has learned to set boundaries for herself and be open about her needs. There are days when she is too exhausted to work, and she listens to her body.

Camille is currently working toward her Doctor of Pharmacy degree and is also a full time advocate. She is not only vocal about her experience with EDS, but she is an advocate for other invisible conditions such as mental health disorders. She shares educational resources and her own story, making it clear that being “Miss America” doesn’t mean you are perfect.

A Shared Dream

When Ryan and Camille met each other, they discussed their shared dreams about EDS and disability awareness. They hope to improve:

  • Awareness among doctors about rare diseases: Most healthcare professionals are taught to think about horses and not about zebras, because most people have common conditions, not rare ones. However, that means that those who DO have something rare often wait years for a proper diagnosis. Early diagnosis is essential because the earlier a diagnosis is given, the earlier treatment can begin.
  • Awareness among doctors about EDS: Since EDS has a wide range of symptoms, doctors must be well versed on the wide range of presentations in order to provide the correct diagnosis. Often times, seemingly unrelated symptoms can be connected to the same disease. For instance, Camille’s scoliosis and crowded teeth were both related to EDS, but she didn’t know that until much later on.
  • Awareness among the public that disabilities affect people differently and not all patients look the same: Not all disabilities are visible and individuals with disabilities come in all shapes, sizes, and accessibility needs. It’s time to get rid of the picture of disability painted in your head and listen to the stories of those living this reality. Ryan remembers how she felt when she was first diagnosed and had no one to look up to. She felt isolated and alone and like she had no one to talk to. Camille explains that she often feels disconnected because her symptoms are invisible. Ryan also discusses how she has been told she “isn’t disabled enough” to have won Ms. Wheelchair VA. Together, these women want to break the stigma surrounding what defines disability and help others feel that they are not alone.

You can read more about the stories of these inspiring women leaders and their continued advocacy efforts here.

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