Life as a Zebra Foundation
Chalked hands clap to gather as the gymnast approaches the mat. Her toned body saunters into place. At the sound of a buzzer, her muscular legs carry her as she flies across the mat; arms springing her into place after several flips. Turn, jump, twist, land and stick it.
Running outside on the trail the spring. The sun beating down. Arms pumping, breath quickening with the pace. One leg in front of the other, propelling further and further toward the finish line.
These were the everyday activities of the Dama sisters, Katie and Allie. Raised athletes, they seemed to be healthy young women.
Without warning, the life that they had known completely changed. Instead of feeling energized and invigorated, all they felt was the cold titanium and rubber spinning beneath their fingers as they were being pushed in a wheelchair. What began as stomach pain and dizziness resulted in life-long illnesses for both sisters.
Katie lost control of her body to the point that she couldn’t stand unless she wore a back brace, neck brace and support stockings. It took 28 doctor visits for her to be diagnosed with Ehlets-Danlos Syndrome, a disease which weakens connective tissue, and Postural Orthostatic Tachycardia Syndrome (POTS). POTS causes a decrease in blood flow, which affects her heart and muscles.
Allie had to undergo 52 days of testing before she was diagnosed with Vasculitis, an autoimmune disease that inflames the blood vessels.
The pain that the two sisters experienced before they were diagnosed is something they would never want anyone else to endure, which is why they founded the Life as a Zebra Foundation in 2012.
The name came from a theory of how doctors are taught to think; if they hear hoof beats, they think horses, not zebras. They are taught to assume that the closest fitting diagnosis is the correct one, which is not always the case. Katie and Allie are zebras; their symptoms didn’t fit into any specific category, making it harder for the doctors to diagnose them.
The organization was founded in the hopes of funding research for invisible diseases similar to theirs, including lupus, fibromyalgia and many more. Although people suffering from these diseases may look well on the outside, their bodies are constantly at battle inside.
As an organization, they push themselves to embody their motto daily: EAS-Z — educate, advocate and support. Going out to schools and attending other community events is a necessity to spread awareness, as many don’t know how to react to people who are facing these life-threatening diseases. The volunteer-based organization thrives on fundraising, grants and donations. Life as a Zebra is currently working to get National Zebra Week on the calendar as an official awareness week.
The funds that they raise go toward helping to prevent misdiagnosis and delayed diagnosis for patients. Their goal is to reach out to medical schools and ensure that doctors and nurses are properly educated on all diseases and how to treat them.
Katie and Allie, as well as many others have faced tragedy and had to endure a large amount of pain because of lack of resources and knowledge. The Life as a Zebra Foundation is glimmer of hope and a step in the right direction for people with hard-to-diagnose diseases.
Tags: activities, outside, spring, sun, zebra