“We don’t want to be invisible anymore”: EDS Stories Shared at the #ZebraStrong Rally

On August 4th, the Ehlers-Danlos Society led the Zebra Strong Rally, which concluded the third day of the Ehlers-Danlos Syndrome Learning Conference in Baltimore, Maryland.

Advocating for Ehlers-Danlos Syndrome

The Ehlers-Danlos Society is a nonprofit organization, which advocates for and supports people with Ehlers-Danlos syndrome (EDS). EDS is a group of genetic, connective tissue disorders, which cause a wide range of symptoms impacting quality of life. While the most well-known symptoms are hypermobile joints and stretchy skin, any organ system in the body can be affected, which greatly impacts quality-of-life. While most sub-types are not considered life-limiting, some complications can be fatal, and still other patients are lost to suicide. To learn more about EDS, click here.

Although the effects are severe, there is a widespread lack of awareness and acknowledgement of the condition. Many patients spend years searching for a diagnosis, and find themselves dismissed by the people around them, including medical professionals. While the NIH officially classifies EDS as rare, the more likely scenario is that it is actually under-diagnosed.

Zebras are commonly used a symbol for people with EDS and other rare or under-diagnosed diseases. As explained on ehlers-danlos.com, “Medical students have been taught for decades that, ‘When you hear hoof beats behind you, don’t expect to see a zebra.’ In other words, look for the more common and usual, not the surprising, diagnosis.” However, people with EDS have a lesser-known condition, and this type of training prevents doctors from seeing their situations accurately.

The Zebra Strong Rally

While people with EDS face a disadvantage when it comes to awareness and funding, at the Zebra Strong Rally on Saturday, patients, family members, and supporters came together to march for the EDS community, and to make their voices heard and presence known.

As Ehlers-Danlos Society’s International Executive Director Lara Bloom described it, “The rally is an opportunity to give voices to everyone, no matter what type they’re living with, what symptoms they’re living with, and what pain they’re in. It’s a chance to show how strong they are, to come together and dazzle.”

The Power of Sharing Your Story

After the group marched in Baltimore, several speakers shared their journeys, their hopes, goals, fears, and experiences.

Bloom started with a powerful message about everyone was there.

“We’re here because we’re all living with a condition no one can see. Some of us are walking, some rolling, some look like there’s nothing wrong at all– but we’re all in pain. We’re hurting. Some of us are dying. But we’re not getting diagnosed. Doctors aren’t listening. But the world is changing because of the work the Ehlers-Danlos Society is doing.”

“Who here was told they were a hypochondriac? Who here took over 10 years to find a diagnosis?” Bloom asked, raising a show of hands.

“We don’t want to be invisible anymore. EDS doesn’t mean you’re just a bit bendy or just flexible. It means you’re dealing with constant pain. One day we’re okay, the next we can’t move. We don’t really understand why, but that doesn’t mean that we shouldn’t be believed or understood.”

Bloom shared a powerful story of a mother who came to her after her 13-year-old daughter had died by suicide, following a lifetime of pain that went misunderstood and untreated. This type of story is devastating, yet occurs too often in people who face chronic pain but receive little support, understanding, or even trust from those around them.

“That is the result of what that treatment [ignoring EDS] does, and it is not good enough. It has to stop. We can’t have anyone else dying from this that does not need to. At the Ehlers-Danlos Society we will not stop— we will not stop while there are still needless deaths.”

Next, Victoria Graham, a 23-year-old who uses pageants as a platform to raise awareness about EDS, stood up and shared her story. Victoria wore a silver tiara and long blue dress. She explained that she was a childhood gymnast— many people with undiagnosed hypermobile EDS find themselves drawn to that sport as children, because EDS enhances flexibility. When she was injured in a gymnastics accident, none of the doctors could understand what was happening in her body, only that her spine seemed to disappear within her.

“So I was terrified— because I left school and saw a doctor who told me that there was no mechanical reason for my pain. He’s right down the street at a world-renowned hospital, one of the best in the world. And there was no mechanical reason for my pain. He said I don’t believe you.”

“And so, thank goodness for my parents, the ones he believed me. We went to see one of the world-renowned neurosurgeons. And not only did he say I believe you, he said there are seven mechanical things in the same exact image that the other doctor looked at. But even better, he said, ‘I can help you.’”

She discussed the ten brain and spinal neurosurgeries she underwent in the following three years, leaving her with a long scar along her back.

“Now I’m known for it. I’m known as the beauty queen with the 23 inch scar, and my goodness, if that’s what it takes. If I have to walk around with a metal crown and a fabric sash for people to begin to listen to us, if I have to stand on stage in an evening gown and trance around— I mean, let’s be serious, I’ve got the hip sway, because we’ve got the movement there— if I have to stand on stage and say ‘I have an invisible illness. I am disabled. It’s time that you start to listen to us,’ then that’s what I’m going to do.”

 

Following Victoria, a mother who chose to remain unnamed, spoke. She shared the emotional journey of parenting a child with EDS, and the scrutiny she found herself under when she disagreed with doctors who had made up their mind about what they thought was happening.

Another mother spoke next, Sandy Aiken Chack, chair of the Ehlers-Danlos Society. While Sandy is healthy herself, she has witnessed and supported her daughter’s struggle with EDS.

Sandy addressed the crowd, “I’m so humbled by and astounded by your strength and your courage and your bravery and how you get through the day.”

“I see these young people who have so much to deal with, and they deal with it with so much grace. It is astounding. We need to serve you better, and we are trying really, really hard. Please just hang in there. We are going to make this better.”

The rally concluded with a chant of “Zebra Strong,” a rallying cry uniting the EDS community as they marched through Baltimore, making an invisible condition seen, heard, and known.


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