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February 11, 2020 at 3:06 pm #14576Jenny LivingstonKeymaster
On Instagram, I’ve started a series called Real Talk Tuesday where we delve into the parts of CF (and life in general) that are sometimes embarassing or difficult to talk about. Join the conversation on Instagram or here in the forum.
In 2016, several weeks after a hospitalization, I began losing my hair. I’ve always been a shedder, but this was unlike anything I had ever experienced! I’d lose handfuls of hair at a time, especially while showering. I remember looking at a sink full of hair one day and crying because I was certain I was going bald.
After a series of tests and doctors visits, I was eventually diagnosed with telogen effluvium – a temporary hair loss condition. Telogen effluvium can be caused by any major stress to the body – surgery, severe sickness, extreme weight loss, and even psychological trauma.
Other common causes of hair loss include: hormone changes, thyroid issues, vitamin deficiencies, environmental factors and medications. One study found that 50% of women with CF who reported hair loss were on Orkambi and 20% were on Symdeko.
In short, there are a ton of potential causes of hair loss and therefore, many possible solutions! And sometimes, the only solution is to wait it out. Ugh.
Since my experience in 2016, I’ve experienced significant hair loss after every surgery and/or hospitalization. I was admitted for a CF exacerbation in November and, right on schedule, I’m currently in a hair loss phase (telogen effluvium usually happens 2-3 months after the triggering event).
In the past, I’ve used hair re-growth shampoos, supplements, and hair fill-in powders to help conceal especially thin spots. But I don’t really do anything now. I know that for me, this is temporary. I won’t go bald and my hair will grow back eventually! It’s not a fun thing, but I’ve (mostly) come to terms with it.
Have you experienced hair loss? Were you able to determine the cause? Do you have any tips for someone currently experiencing hair loss?
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