Narcolepsy is a life-long, chronic disorder of the central nervous system characterized by the brain’s inability to control sleep-wake cycles. It affects about 1 in 2,000 people in the U.S. and 3 million people worldwide, with the onset of symptoms starting between the young ages of 10 and 17. However, due to lack of awareness of narcolepsy, it’s estimated that half of people with the disorder don’t know they have it.
One family that has been impacted by narcolepsy is the Mankas, who are based in Chicago. Howard and Mindy Manka’s 12 year-old son, Parker started showing narcolepsy symptoms at age 8. Two and a half years later he received an accurate diagnosis of narcolepsy. Since then, the Manka’s have helped to spread awareness of narcolepsy in their community by sharing their story. They also coordinated and hosted the 2014 Extinguish Narcolepsy Golf Outing in Chicago.
Mindy Manka talked to Brandi Walker about the challenges that her family had to overcome while dealing with his condition, why it took so long for doctors to find the right treatment for him, and whether the family think there will ever be a cure for the disorder.
1. How long has your son had narcolepsy? 4 1/2 years.
2. What challenges have you and your family had to overcome while dealing with this condition? The public’s misunderstanding, explaining to a child that he may not get to do things like other kids, getting the school on board, accepting that times are difficult and adjusting to a new normal way of life.
3. What medical treatments has he used for this illness? We have tried numerous treatments. It takes a long time to find what will work for you and in what combination. We would encourage anyone who struggles with this condition to visit www.wakeupnarcolepsy.org to learn about available treatment options.
4. How has narcolepsy affected your son and your family’s quality of life? His quality of life was diminished. There was a three-year period where he never smiled or laughed. Everything was a battle and our little boy was gone. He was angry and irritable all day every day.
5. What advice do you have for people dealing with narcolepsy? Keep being persistent with Doctors. If something isn’t working, tell them so you can try something else. With the right treatments and nap schedule, you can live a happier life. Also, I would tell them they are not alone. Reach out to others for support and encouragement! Visit www.wakeupnarcolepsy.org for resources and support.
6. What are some examples of the day-to-day tasks your son has struggled with? His everyday struggles can be simply staying awake to eat and make it through a school day.
7. How much confidence do you have that there would be a cure for narcolepsy? It’s really hard to say, but that’s why organizations like Wake Up Narcolepsy are committed to supporting and funding research to identify new treatment options and hopefully someday find a cure. Since 2009, Wake Up Narcolepsy has raised more than $367,000 to support narcolepsy research.
8. Why did it take so long for doctors to find the right treatment combination for him? The first thing is taking the time to find the right diagnosis. Then after that its trial and error and everyone’s body is different.
For more information about narcolepsy or to make a donation to help fund narcolepsy research, visit www.wakeupnarcolepsy.org.