I’ve had a lot of people ask me recently, not unkindly, about Jessie’s hair loss. Jessie has Alopecia Areata and although she has had it for a long time it’s more visible than ever. Alopecia Areata is an autoimmune disorder that causes your immune system to attack your hair follicles. It is considered to be Alopecia Areata when there is some hair loss but not complete baldness. If all hair is lost it is called Alopecia Totalis. Alopecia Areata is more common in Down syndrome, affecting 5-9 % of people with DS compared to 1-2% of the general population.
The first time we noticed some round bald patches in Jessie’s hair she was 3 or 4 years old. It was on the back of her head and low, near the neck. Unless we put her hair up, it wasn’t visible to anyone else. After I mentioned it to her pediatrician, we later saw a dermatologist.
Although the dermatologist explained that it was an autoimmune disorder where the immune system attacks the hair follicles, it was actually a hair stylist that clued us in to there being a connection to when Jessie has been sick. The hair stylist had a client who would get a bald spot (hers seemed to reoccur in the same spot) whenever she got sick and would later grow back in. This isn’t mentioned in the articles I read, so this doesn’t seem to always be the case. It makes sense to me, however, that it would happen when the immune system is stressed from sickness.
Since the first time Jessie had those two bald spots, I think she has always, or almost always, had one somewhere on her head. Sometimes they were visible and other times not so much. When she was 5 and in preschool she was sick more often than she ever had been. She lost a lot of hair. It wasn’t quite as visible as her current state because it wasn’t in the front.
Sometimes her hair grows in quicker than others, but it usually takes several months to a year. Last year she had several ear infections in the winter. She swims on the swim team and also had a couple of colds. Looking back, I don’t think her ear was completely clearing up because now that it has, she hasn’t had any more ear infections since then. She has had two sets of ear tubes, and still has a tube in one ear.
It doesn’t 100% of the time seem to be linked to sickness, but is almost always during the “sick season” and rarely during the summer that she looses hair. She will still have bald patches but won’t usually lose more hair during the seasons that everyone else is typically well.
There was one year when she lost most of the eye brows on one side. It wasn’t very noticeable though because of her glasses. When she was younger, Jessie didn’t think as much about it, but at 16, she’s very aware of it and sometimes she’s self conscious and sad about it.
When she first developed the bald patches we tried a topical steroid cream. The dermatologist told us the cream didn’t have a high success rate, but that we could try it. It didn’t work for us. Adults sometimes do steroid injections into the scalp (suppresses the immune system) but that isn’t recommended for children. The dermatologist said it is painful. We didn’t consider that option at the time.
I haven’t done a ton of research into autoimmune disease. Honestly, when she has less hair loss I forget about it for a while. The hair loss though is an indication of an immune system malfunction (don’t you love my layman’s terms 🙂 ) If you google Down syndrome and autoimmune disease, most search results have such a high level of medical jargon that I don’t understand the bulk of it. What we have known for a long time though is that the immune system of the person with Down syndrome is impacted by the chromosomal abnormality.
Sometimes rather than think about autoimmune disease, I prefer to
bury my head in the sand just watch Netflix. But on a day when I’m feeling like my brain can take it, I plan to learn more. I have listened to some other podcasts by Wellness Mama. I find her easy to listen to and she interviews very knowledgeable guests. I have heard her mention but haven’t yet listened to her podcasts on autoimmune disease but that’s on my list of things to do.
If you have knowledge about or experience with Alopecia Areata and Down syndrome or resources to point me in the right direction, I would love to hear from you.
Hope you’re having a great week. And that your hair isn’t falling out. I couldn’t resist.