RANDOM ACTS OF KINDNESS: Life As a Zebra Foundation

In medical school, students are taught to diagnose patients based on the condition that is most likely. As the saying goes: “When you hear hoof beats, think horses, not zebras.” The horses are the likely explanation, while the zebras are less likely. A medical zebra, then, is a person with a hard to diagnose medical condition. These conditions are often referred to as ‘invisible illnesses.’ Invisible illnesses are chronic conditions that are not apparent to casual observers. They can be misdiagnosed by health care providers and ignored by medical researchers.

Lansing-natives, Katie Dama-Jaskolski and Allie Dama were diagnosed with their own chronic, rare, and invisible illnesses in 2008, but lived with debilitating symptoms for months before a correct medical diagnosis was made. They began sharing their stories about redefining their lives and learning to live with their new realities through the Life as a Zebra blog. The website grew and Katie and Allie decided to make it their goal to raise money and awareness for invisible illnesses.

Dama and Dama-Jaskolski hosted the first annual Invisible Illness Benefit on April 14, 2012 in Lansing, Michigan. The event raised $12,464.42 for Ehlers-Danlos National Foundation, National Dysautonomia Research Foundation, and Vasculitis Foundation – the three invisible illnesses that made the Dama sisters medical zebras. Just as the blog grew into a fundraiser, the fundraiser grew into a foundation.

The Life as a Zebra Foundation was co-founded by Dama and Dama-Jaskolski as a domestic nonprofit organization on November 8, 2012 and on September 29, 2013 the foundation received its 501(c)3 status. They expanded their efforts to educate, advocate, and secure funds and charitable contributions for the prevention, treatment, and research of various hard to diagnose, sometimes rare, invisible illnesses.

Specifically, the Life as a Zebra Foundation works to:

Educate the public about the pervasiveness of invisible illnesses. Nearly half of all Americans have chronic medical conditions, and nearly one in four Americans have more than one chronic medical condition. Ninety Six percent of people with chronic medical conditions live with conditions that are invisible. Invisible illnesses include lupus, fibromyalgia, interstitial cystitis, rheumatoid arthritis, vasculitis, Crohn’s disease, and Ehlers-Danlos syndrome, among many others.

Educate the public about the economic impact of invisible illnesses. Approximately 78% of all health care dollars are spent on people with chronic health conditions. Chronic, disabling conditions limit daily activities, including the ability to work, for one in ten Americans.

Educate health care providers about the medical needs of individuals living with invisible illnesses. Physicians complain that medical schools provide little education and training on diagnosing and treating chronic, invisible illnesses. As a result, people with those illnesses can face delayed diagnoses, misdiagnoses, and lack of understanding and support from health care providers.

Build support for medical research to understand more about invisible illnesses. Of the tens of thousands of studies funded via the National Institutes of Health, only a small percentage focus on rare, invisible illnesses. In July 2014, there were just fifteen federal studies on Ehlers-Danlos syndrome registered with clinicaltrials.gov.

Bring together disparate organizations that support and advocate for people living with invisible illnesses. The Life as a Zebra Foundation is a Lansing, Michigan-based non-profit organization that raises funds for and awareness of invisible illnesses. It is committed to building on existing partnerships with organizations that focus on specific invisible illnesses to do the most good.

In an effort to advocate and raise awareness on a larger-scale, The Life as a Zebra Foundation spearheaded a campaign for a Michigan Invisible Illness Awareness Week. On Wednesday, May 21, the Michigan Senate unanimously adopted a resolution declaring the week of May 25-31, 2014 as Invisible Illness Awareness Week in Michigan.

In July, the Life as a Zebra Foundation met with congressional leaders in Washington, D.C. to discuss the prevalence of invisible illness in the United States.

Life as a Zebra Foundation is looking forward to hosting their 4^th annual benefit concert at Kellogg Hotel and Conference Center in East Lansing, MI on April 11, 2015. This event is sure to be a wonderful night of information, entertainment, and hope.

Dama and Dama-Jaskolski, speak publicly to media, schools, and various events. For more information, please visit The Life as a Zebra Foundation website or contact Katie Dama-Jaskolski at katie@zebranation.org.

Katie Dama-Jaskolski is the co-founder and president of the Life as a Zebra Foundation.

Appreciate ELi's timely reports on what's happening in our City? Then donate to support our work bringing you editorial-free, high-quality news of the people, by the people, and for the people of East Lansing!  Donate easily on line or donate by check. Because ELi is a recognized 501c3 nonprofit, your donations are tax deductible. Do your part to keep ELi humming!

Also, please sign up for ELi’s Weekly Roundup. Click HERE.