Rare Disease Day: Our journey with alopecia
February 28, 2023 is Rare Disease Day. It’s a day to raise awareness of the over 7,000 rare diseases that impact over 300 million people globally. One of the challenges for rare diseases is that they don’t get the same kind of attention in medical and research communities, since they don’t affect as many people. But organizations such as the National Organization for Rare Diseases (NORD) work to achieve equity in health for the often overlooked diseases. Their very apt slogan is “Alone we are rare. Together we are strong.”
Rare diseases are rare. And yet, there are so many that they become common. You likely know someone with a rare disease.
My daughter Gwen has alopecia universalis- the most advanced form of alopecia areata. She has a complete loss of hair on her scalp and body. It’s an autoimmune disorder and we don’t always think of it as a “disease” but rather a “condition”. But technically, it falls into the category of rare diseases.
Knowing how important it is to raise awareness about rare diseases, we have been able to take advantage of several opportunities to share more about alopecia and our journey:
I wrote about our journey (and made a video!) for Parents.com. Check it out here: Seeing My 3-Year-Old Daughter Lose All Her Hair to Alopecia Was Devastating, But I Won't Let It Define Her
Gwen was featured as one of Greg McQuade’s Heroes Among Us for CBS6 Richmond in Little girl with alopecia may have lost her hair, but she didn't lose her spark. “I don’t want to cover it up. I want to show people I am bald and brave.”
Parenting a child with alopecia comes with a variety of challenges. I had the opportunity to write about them in Richmond Family Magazine a few years ago. “You are special… but just like everyone else! And Four Other Parenting Conundrums”
Our community has been absolutely wonderful. Gwen lost her hair a few months before starting kindergarten. A high school student at our small school, Bailey Rutherford, wrote to Mattel and got a donation of two bald Barbie dolls for the classroom, where playing with dolls was a popular activity. The sweet story was featured in our local paper, the Farmville Herald.
If you’re looking for details about alopecia, I worked with the wonderful folks at the Science Museum of Virginia to write Alopecia Areata: The Medical Condition Explained.
I’ll write more in the future about parenting, alopecia, rare diseases, and my family. For today, I encourage you to think of those you know with a rare disease and consider how to support them.
