The People Behind the Disease - Part 1

10/18/2016 09:28 am ET Updated Oct 18, 2016

The People Behind the Disease

The Importance of Fundraising for Genetic Conditions: An Interview with Katie Dama-Jaskolski

We recently had the great pleasure of talking with Katie Dama-Jaskolski, the co-founder and president of the Life as a Zebra Foundation, about why fundraising is so important for foundations that serve people living with genetic conditions. As a person living with a genetic condition herself, Katie’s expertise on the subject matter is equalled by her passion for her work and foundation. Read more about life with an “invisible illness”, fundraising challenges, and her outlook for the future below. - Yael

How does living with an “invisible illness” change people’s perceptions of a specific disease? Does it impact your work in raising awareness/funds?

I can only talk from my personal experiences about how living with an invisible illness (EDS, POTS, and Gastroparesis) changes people’s perceptions of a specific disease. I have made it my mission to keep people educated about how it affects my day to day life. I feel it takes constant communication and education about the specifics of how it affects me; for example, explaining why I can’t work full time, why I must park in the handicap spot on my hard days, why swimming at the beach with family will make me sick…and then what I NEED. I have found that if there is not that level of communication and education for others about my conditions, then people’s perceptions often are NOT changed.

This definitely impacts our work in raising awareness and funds. It brings educating our community, our youth, our medical professionals, our legislators, and our family and friends to the forefront. Change will only happen when people understand the “whys,” and then the specifics of what they can do. Further, change often happens when people can relate to others. We always say, “everyone knows someone” with an invisible illness. We find that once the conversation is started, we hear, “my aunt has…” or “I know a coworker who has…” or “I never realized…” From my experiences, it is often not that people don’t want to understand and help, they just are not educated enough to know what to do or how to help people with invisible illnesses.

Also, the general population does not usually know what research projects are out there and what is being done. Currently, we are helping fund Dr. Grubb’s research (University of Toledo Medical Center) on Postural Orthostatic Tachycardia Syndrome. Therefore, as a foundation, it is important that we are receiving regular communication about the research so we can explain to donors why it is important to fund the project.

I think the bottom line is people often want to help. They are just not sure how. We work as a foundation to explain the how-to’s; whether it is through education, awareness, or research.

Why is fundraising important when looking to the future of a genetic condition?

Fundraising is crucial for the future of genetic conditions. Genetic conditions take research to move forward. Research takes dollars; LOTS of dollars. Many genetic conditions are often overlooked, misdiagnosed, or not even recognized as “official” conditions yet. They often do not have the exposure that more well-known conditions such as cancer has, which often makes it difficult to receive the funding to make strides in learning more about these genetic conditions, and ultimately finding cures. Therefore, fundraising is huge to not only raise funds for the high costs of research, but to also bring awareness and exposure to these conditions.

What are some of the ways that fundraising for the future can help people manage their conditions today?

Fundraising for the future provides people hope knowing today may be difficult, but there ARE organizations that are working towards a cure for tomorrow. Also, fundraising is key to ensuring research. As discussed before, quality research costs more than my brain can even process. At this time, these illnesses are rarely funded by more conventional sources. We must be proactive and keep fundraising a priority in order to help people have a better quality of life, and ultimately, find cures.

In addition to that, fundraising efforts can successfully bring people together who have similar stories of struggle and illness, and that in itself can be healing.

Apart from raising money, what can people living with genetic conditions (and their support systems) do to help advance how their condition is managed?

Social media is huge. People living with genetic conditions can share with others what works, what hasn’t, and can just be a listening ear for the struggles people with genetic conditions face. I have learned about wonderful doctors and therapists from others who also live with genetic conditions. I have read research articles that various Facebook groups have posted. Blogs are wonderful, too. Sometimes you find one and think, “is this person living my life?” Being able to relate to others and know that they just “get it” often can be all the therapy you need for that day to keep pushing forward.

Working with our Michigan representatives and senators has also been a great way to raise awareness for invisible illnesses. The Michigan House of Representatives has adopted resolutions for two years in a row, while the Michigan Senate has adopted resolutions for three consecutive years to declare a week in May, “Invisible Illness Awareness Week” in Michigan. This often gets positive media attention which in turn, raises awareness and often brings fundraising donors out of the woodwork. I think the biggest thing is finding people to help who have a wide reach, who can help reduce the stigma that invisible illnesses have, and can bring attention to the issues that come with genetic conditions.

I also find that sharing the good, bad, and ugly with others about my conditions helps. It is hard to judge someone who doesn’t understand if we do not explain what we are going through and what we NEED. Here’s an example. What people don’t know is that although my hair and makeup may be done, and although I may look put together like my normal, “healthy” self, the process of getting ready for the day now requires many rest breaks, many checks of my heart rate, many periods of lying down, and basically 10 times the energy that it used to take to make myself look presentable. Or that after I take a shower, I usually need a good 30 minutes to recover by laying down with my legs up so the blood that has pooled in my legs can return back up to my brain, to help make my headaches and nausea go away. Or that when I do truly look sick, I am usually not out in public where people can see the “sickly” me. People can’t know this unless it is communicated.

As a foundation, we also believe in beginning our message with our youth; providing information to young children in schools to not judge a book by the cover. If we can mold their thinking to be accepting, loving, supportive, and empathetic toward those struggling with invisible illnesses we could reduce the stigma that often comes with invisible illnesses.

If medical schools, nursing schools, physical therapy schools, etc. had a portion of their curriculum about invisible illnesses and diagnosing hard to diagnose illnesses, I believe more medical professionals would have an easier time thinking out of the box, and people seeking diagnosis’s would have less frustration getting answers and being taken seriously.

What do you consider to be the most profound/inspiring part of your work?

The people we meet. The people who are questioned every day about their conditions, yet they continue the fight of bringing awareness to invisible conditions. The people who battle their bodies every day and refuse to give up. The people who say, “I may not be able to stand up, but I have two legs and the sun is shining.” The people who have lost their fight, and the profound impact we have seen it has had on their loved ones.

Also, the generosity of the community and strangers all over the world who we have experienced firsthand. Also, the feeling of "togetherness" that our foundation works to provide. That feeling of support and acceptance.

It is the people. The people who all have their own unique story who inspires our work.

Anything else you’d like to share about your experience?

Sometimes you wonder just how much of a difference you are making. Then you get an email from a family who lost their daughter to Ehlers-Danlos Syndrome, thanking your organization for giving them hope, a place who understands, and the inspiration for THEM to fight these conditions by raising money and awareness themselves.

And then you realize the immense power of what a few people can do, and you keep going.

Katie Dama-Jaskolski is the co-founder and president of the Life as a Zebra Foundation. She also currently works as a pre-kindergarten and kindergarten teacher in Lansing, Michigan. After becoming suddenly sick in 2010, and spending months seeing multiple doctors, Katie was eventually diagnosed with Ehlers-Danlos Syndrome and Dysautonomia (POTS). Katie spent most of 2010 and 2011 very ill and unable to work, in a neck brace, back brace, and wheelchair. After going through intensive rehabilitation and other treatments, Katie has been able to return to teaching half-time, and has accomplished many physical goals such as completing 5Ks and Olympic style weight-lifting. Katie has made it her mission to help bring visibility to hard to diagnose, often invisible conditions, and works to do this on her blog at lifeasazebra.com and through the organization she co-founded with her sister, Allie, called the Life as a Zebra Foundation (ZebraNation.org).

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