When your child is diagnosed with a rare disease, it’s a large undertaking to figure it out and learn how to handle the news emotionally and mentally. When that child becomes diagnosed with yet another disease on top of it, it’s overwhelming.
My son, Jackson, has Alagille syndrome (ALGS). In December 2020, I started noticing his hair falling out. He had a full, thick head of hair so it was hard to tell but you could see areas that were thinned. I was concerned, but we recently got over COVID, and a 4-hour dental surgery days before we tested positive for COVID, so I assumed he’d been through recent trauma and that was the cause for the hair loss.
The thinning turned into patches of missing hair that became so noticeable I decided I needed to shave his hair to disguise the hair loss. At that point, I started to become concerned as the hair was continuing to fall out and there wasn’t any regrowth. We had an appointment with the liver team when we discussed this and they also assumed it could be related to the recent body trauma as all labs for vitamin levels and anything else that’d concern them were perfect. They suggested a pediatrician visit.
We saw the pediatrician and she confirmed she thought it was alopecia areata and recommended we see a dermatologist. We quickly made an appointment because the hair loss was getting worse. The diagnosis was confirmed. Devastated doesn’t begin to describe how I felt. Not only do I have a child with a liver transplant who is on daily medication and must deal with symptoms of ALGS, but now he has this random autoimmune disease that affects his hair and appearance.
Read more about experimental therapies for ALGS
We tried topical steroid creams and the hair regrew, and we got to enjoy 4 months of hair before it started to fall out again. This time it fell out more quickly and worsened to alopecia totalis (AT). We’re trying treatment options, but our options are limited due to the liver transplant. The dermatologist isn’t comfortable trying most of the options to reset or suppress the immune system because it can damage the liver.
There are also Epstein-Barr virus (EBV) concerns so the transplant team isn’t comfortable trying options that include steroids. We’ve changed his immune suppression medication in the event the hair loss was a side effect of the medication. It didn’t help. It’s a hard place to be in where you try to make your kid “better” but have limited options because of another condition.
I reached out to other families on the ALGS Awareness Facebook page run by the Alagille Syndrome Alliance to see if other families were struggling with alopecia or hair loss and it seems there are a few in the same boat as me. We’re all struggling to look for answers and dealing with yet another concern. There doesn’t appear to be any research data showing a link between alopecia and ALGS, but I am starting to wonder what the link may be. I have hope that at some point the hair loss will be studied and we might be able to find answers for why this is affecting ALGS patients.
In the meantime, we’re still trying the topical steroids and are working with a functional medicine doctor to look more in-depth at my son’s gut function and food sensitivities so that we can try to counteract the alopecia and get his hair to regrow. It’s been a very emotional journey, not only for us.