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Support for Teens living with Mito
Moving On With Mito, A Guide for Teens and Young Adults Living with Mitochondrial Disorders helps emerging adults with Mito prepare and stay healthy for the next stage of life. This guide was created by Rob Auffrey, MA, Susan Waisbren, PhD, and Freedom Baird, MS, who are grateful for the immeasurable help provided by Cristy Balcells and MitoAction.
"But you don't look sick!" is a project funded by MitoAction in partnership with Anne Reckling, PsyD and Reed Elsevier Cares International. Interviews with teens living with mitochondrial disease will be available here as digital audio files and text documents. We are working to create a dedicated support area and safe online chat community for these extraordinary teens.
MitoAction is the recipient of a Reed Elsevier Cares International community grant for $6500 for the support of this project.
Many young people living with Mito tell us that their disease is "invisible," and that they often feel alone in their struggle to "be normal" while dealing with the unpredictable symptoms of their disease.
In truth, these young people are not alone! The children of the last decade who were diagnosed with mitochondrial disease are growing into their adolescence, sometimes defying the odds againstthem. These teens
are painfully aware of their prognosis, and yet choose to make the most of the life that they were given.
Consider their stories:
- Brianna is a black belt in tae kwon do and attends a performing arts school, despite a crisis that required an emergency pacemaker
- Donovan thrives on his workout every day, and is not only muscular and fit, but also helps a younger child with Mito in his Maine community. He takes the Mito cocktail every day.
- Olivia missed 120 days of school in a year, but enjoys fencing and met Antonio Banderas.
- Harry graduated high school and has plans to go to medical school. Seventy percent of his vision has been lost due to Mito.
We asked teens across the country to speak out about their mitochondrial disease
Donovan, age 17 from Maine
"I come first... because, who knows? I have the energy now, but I might not have it tomorrow, I might not have it next year, you never know. I have big plans for myself."
Morgan, age 15 from Georgia
"What is too much? At the same time you don't want too little, because if you don't use it you lose it... yes, it's the same for people with mito, but for us, if you use it too much, you also lose it."
Reed, age 13 from Georgia
"I love roller coasters!"
Harry, age 19 from Rhode Island
"We don't let the disease control our lives, we live through it and we make sure we give ourselves time to do what we want to do."
Olivia, age 14 from Rhode Island
"When it comes to it, I just end up describing myself as a battery that needed to be charged... I would want other teens to know that they aren't alone, and that there are ways that you can manage mito. You have to live through it, because you can't just live in survival mode ."
Annalise, age 23
"It made my friends more protective of me. They didn't really want me doing the same things that they did because they were afraid I would get hurt or I'd get sick or something would happen, which was nice, but I'm not a porcelain doll. I'm not going to break."
Kristen, age 18
"I can't change some things, but as long as you don't let it, it's not going to ruin your life. If you're like, 'This is so horrible,' then it probably will be more horrible than it has to be."
Jamie, age 18
"When I got to high school, things changed, and everyone was understanding of it, and they could care less that I had this disease. I just want to tell younger kids that it gets better, if you're getting made fun of. Older kids aren't really as mean."
Got an iPod? Get all these interviews as podcasts in iTunes