Wednesday, September 2, 2009


School started and we survived the first day jitters just fine. My baby went to middle school and the older kids tell me these years can be pretty stressful in the best of circumstances. Imagine heading to eighth grade with no hair! That is how it is for Mark.

After two years of trying to figure out why his hair was coming out and not growing back, a biopsy confirmed that he has alopecia, an incurable autoimmune disease that causes hair loss. This condition is more common than I realized, but only a small percentage of people afflicted with this devastating disease experience total hair loss on the head, face and body (alopecia areata universalis); but that is exactly my son's diagnosis.

We always try to find the positives. Alopecia is not a symptom of a more serious disease. It is not life-threatening, although it can be life altering. But the biggest positive is the great people you meet along the way who help you to cope and live life to the fullest. I cannot thank our dermatologists, Dr. John Legere of Lancaster and Dr. Jeff Miller of Hershey for all their skill and encouragement. But most of all I look to parents of Alopecia kids who have made it their mission to educate, raise awareness and give other parents and kids with alopecia the support they need.

One couple, Betsy and Jeff Wytovich of Reading, Pa, have started an organization called CAP (Children's Alopecia Project). They list as their mission " build self-esteem in children living with all forms of this instilling confidence and self-acceptance..." This group has provided us with a place to turn; they have organized picnics, meetings, acitivities, special events and camps so these children can meet each other and learn they are not alone. CAP empowers these kids to be stronger teens.

So thanks to people like Jeff and Betsy who don't sit on the sidelines, but take on the daunting task of starting a national organization, caring about all kids, and giving us a much needed boost. My cap is off to you, everyday heroes and examples to all of us.

I will leave you with this quote from a website of the mom of Ashley, a 14 year old with alopecia:

God made only a few perfect heads, the rest he put hair on.

Have a great year, Mark!

1 comment:

  1. Great Blog. Love the quote at the end. Good luck to Mark. Thx for sharing.