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My son, Jackson, has Alagille syndrome (ALGS) and is 3 years post-liver transplant. More than a year ago, he was diagnosed with alopecia. So far, from the information we know, the liver transplant and ALGS part of his life has nothing to do with the onset of the alopecia, but it sure doesn’t make it easy to treat it.

After the alopecia diagnosis, we were able to start topical steroids and Janus kinase (JAK) creams, which worked at first and helped him to regrow his entire head of hair, including his brows and eyelashes. After weaning off the creams for a few months, we noticed a patch of hair missing and quickly every single strand of hair on his entire body was missing. We tried creams again, but they didn’t work that time around. 

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Still, over a year later, he is missing his entire head of hair. The liver transplant stemming from ALGS has made the treatment of his alopecia difficult. There are a few options of JAK creams on the market that have been tested and used for treating alopecia. They have been successful in a lot of patients in regrowing their hair with an 80% chance of hair regrowth. However, because the JAK creams come with some pretty hefty warning labels and are a form of an immune suppressant, we are not able to use them for Jackson. 

The transplant team is worried about a few things. One thing would be suppressing his immune system too much and making him more at risk for viruses, germs, and all the fun things that go along with a suppressed immune system. In addition to that, they are worried about his elevated Epstein-Barr virus (EBV) levels.

The concern is that adding immune suppression would increase the EBV levels, making it harder for his body to potentially clear the EBV and additionally putting him at higher risk of post-transplant lymphoproliferative disorder (PTLD). 

There have been some medications they have been open to Jackson trying and have cleared on their end such as Dupixent® and oral minoxidil. Hopefully, the use of these alone will help Jackson with his alopecia. However, it’s disheartening that we aren’t able to move on to “harder” medications that are proven to help.

While Jackson’s life and liver transplant are the most important things, it would be nice to be able to treat his alopecia. We are very grateful for the second chance he was given when he received his gift of life, but it’s hard not to feel somewhat upset because there are other issues that are going on for him and they are unable to be treated because of other medical conditions he has. It just seems like a catch-22. It’s another uphill battle we are fighting and we are thankful our transplant team is open to conversation and dialogue surrounding this issue so if there’s ever a change or something else we can try we can get our hands on it.