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Karyn Aussems grew up in the Netherlands, and experienced her first epileptic seizure at the age of 3. She continued having seizures until she was 25, when brain surgery "cured" her from having seizures. As an adult, she launched an epilepsy advocacy organization called Youth on the Move in her home country, and just recently expanded its mission to Kenya — a continent away. Distance and culture may separate the two nations, but the issues affecting young people with epilepsy are the same across the world. Karyn understands.

"I KNOW how it feels"

Having grown up with epilepsy herself, Karyn can empathize with the special concerns of youth facing the disorder. "I know how confusing and frustrating it can be if you cannot rely on your own body," she says. "I know that it is even more frustrating if people around you do not really know how to help you."

She speaks of having trouble with memory and concentration in school, and of being bullied because of her epilepsy. She had few friends, and her self-esteem was very low. "I did not believe in myself, and thought I was a failure," Karyn remembers. "I saw myself as a burden for the people around me." Her spirits fell so low that as a teenager she even thought of suicide, but fortunately she didn"t act on her impulse.

Counseling, Confidence, and Change

Karyn did not complete secondary school, and she knew she needed help. "I got counseling and learned how to deal effectively with epilepsy. I was finding ways to get more self-esteem and pride."

The schoolgirl who had faced difficulties in secondary school — "learning more facts than ever before and…more challenged with my memory" — knew to start her bachelor’s studies in Cultural and Social Education after her brain surgery. She graduated as a professional youth coordinator specializing in youth empowerment, winning the prize for the best thesis.

Obviously, Karyn hadn"t forgotten the more important lessons of her childhood. As she says, "Now I see it as my duty to help youth with epilepsy feel proud of who they are."

An Added Challenge in the Growing-Up Years

It can be difficult to be young. Youth want to fit in, to explore their boundaries, to break free from their parents’ influence. Karyn Aussems dealt with all these aspects of growing up, but epilepsy adds another layer of complexity. "Life is more confusing for youth with epilepsy than for adults with epilepsy," she believes. "As a youngster, you are still developing your own identity, your body is still changing, and there are still so many choices to make."

School poses problems for many youth with epilepsy, as it did for Karyn, this due to being different from other classmates and due to difficulties with concentration. Parents can also be overprotective ("It was often my mom choosing or speaking for me," Karyn says). Epilepsy impacts everything from dating to driving to making plans for the future. Even an act as simple as staying up too late — a normal "rite of passage" for nearly all teens — can bring on a seizure in teens with epilepsy. "Youth with epilepsy have to listen more to their bodies than others," Karyn relates. For example, the use of alcohol or illegal drugs can worsen seizures in some adolescents.

Low self-esteem is common among adolescents with epilepsy, so establishing limits and boundaries when it comes to sex can also present a challenge. As Karyn says, "I believe that many youngsters know very well how to avoid unsafe sex, but the number of young people having the assertiveness to give boundaries in their sex life is much too low. And I think this is an international problem. In an American study, approximately 30% of women with epilepsy who were age 24 years or younger experienced unplanned pregnancy, a higher rate than in the general population."

The unique fact of having epilepsy can make it even harder for youngsters to find their place. After all, what teen wants to be thought of as "different"?

Starting a Movement

Karyn "did not want anything to do with epilepsy" after her successful surgery, which helped her to achieve complete seizure control. A traineeship in Kenya, however, changed her mind. There, she heard about a child with epilepsy who was literally kept in chains because "people did not know how to deal with him." That child’s story inspired her to start Youth on the Move, a national organization designed to open the lines of communication about epilepsy. Karyn states its main goal simply: "Most important, to give youth with epilepsy a feeling of pride in who they are and acknowledgement in society by creating awareness about what epilepsy really is."

Although she started the organization in the Netherlands in 2006, Karyn never forgot about that boy kept in chains. It only took her two years to secure enough funding to bring the movement to Kenya. She soon learned that youth with epilepsy there faced not only the medical realities of their condition, but also the challenges of ignorance and fear in society.

Many Kenyans believe that epilepsy is contagious, that it is a "punishment from God" or even a form of demonic possession. Many youth with epilepsy, like Youth on the Move coordinator Moses Waweru, were told to keep their condition a secret. Moses’s parents didn"t know much about epilepsy. They were ashamed of it, and so was he.

Karyn started Youth on the Move to combat this misinformation, but she knew it couldn"t be done by education alone. She had to find a way to make the subject interesting. Through her training center, the internet, social networking sites like Facebook, and most especially music, she’s done just that. August 30, 2008 marked the very first "Movers Festival" in Kenya, which featured many famous Kenyan performers. Youth on the Move members even wrote a song about epilepsy, set to an infectious Afro-pop beat, which was recorded by several well-known Kenyan musicians. "Even Kenyan people who are not interested in epilepsy will listen to the song, and listen to the message of youth with epilepsy," says Karyn.

That message? "Hakuna tofauti, tuko sawa." "There is no difference; we're equal." To listen to this song, please click.

Progress and Promise

What has Karyn achieved with Youth on the Move? In less than a year, quite a lot. The organization has trained six youth coordinators to educate and coach their peers with epilepsy, created a website, and set up a music festival. In addition, the organization is working with the Ministry of Youth and Sports to bring greater epilepsy awareness to Kenya’s schools, and is even talking with the Ministry of Labour about improving epilepsy rights in the workplace.

But the most important measure of progress may be Moses. He doesn’t have to hide anymore.

Karyn dreams of turning Youth on the Move into a worldwide movement. She says, "I hope that influential people who read this will feel motivated to get in touch with us to see how we can indeed make this an international program." It’s an ambitious goal — but no one who knows Karyn would discount it.

As she says, "I am still surprised to find out all the things I can do."

Contact Karyn at karijn@youth-on-the-move.com and visit the site www.youth-on-the-move.com to learn more about Youth on the Move.

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