One of the things that prevents patients from being properly diagnosed is not knowing when something is a symptom. Another is being too embarrassed to talk about certain subjects. I have experienced both of those problems, so I’ve decided to do a series of short posts about symptoms I’ve experienced. It may be unnerving to read about some of the more bizarre symptoms, but the only way to increase awareness and remove stigma is to talk about these things openly. I hope this will help others to know they’re not alone, and open up the conversation about how our bodies are reacting to our medical conditions.
I’m beginning with a very strange and unnerving symptom that unfortunately I am still experiencing – lanugo. Lanugo is downy, unpigmented hair that covers the body of some newborns. It’s the first hair that grows from the hair follicles, and is usually grown around the fourth or fifth month of pregnancy and shed by the seventh or eighth. In babies, the purpose of lanugo is to help a waxy substance called vernix, which protects the skin from the amniotic fluid, adhere to the skin. It’s more commonly seen in premature babies since they haven’t yet shed it in the womb, but it can be seen in any newborn. It’s usually shed in a few weeks after birth.
Lanugo can also been in severely malnourished adults. It’s a rare and little known symptom, and almost exclusively talked about in the context of eating disorders. However, it can also be seen in adults who are malnourished for other reasons, for instance, due to digestive disorders like gastroparesis. As on newborns, the purpose of lanugo is to protect the body. Eating disorders and other conditions that cause malnutrition result in insufficient body fat, which helps keep the body warm, so lanugo grows as a response to insulate the body. It’s usually very fine and unpigmented, and appears almost like a light fur. It can grown anywhere on the body except the lips, palms, and soles of the feet.
I’ve always had very little body hair. However, in 2013, as I lost more and more weight and finally ended up with a BMI of 15.2 (underweight is under 18.5), I was hospitalized several times for severe malnutrition. I developed lanugo, along with other symptoms of severe malnutrition, which I’ll discuss further in a later post. I remember noticing that I suddenly had hair on my upper arms where none had been before, and my mom commented on it at one point, prompting me to examine further. To my horror, I now had a very fine, downy, fur-like hair over much of my body including my face, the hair on my arms and legs had gotten longer, and there was a lot more of it.
I freaked out and felt a twinge of despair – I knew my body was shutting down, and no woman wants more body hair, especially on her face. I did some research and found out what it was, and resolved to ignore it until it went away. Luckily it remained so light and fine that pretty much nobody notices it except me. While waiting for it to go away, I started shaving my upper arms and used an electric shaver to make the long hair on my lower arms shorter. I also, although I’m ashamed to mention it, used the electric shaver on my face, not wanting to use an actual razor.
I had my feeding tube surgery in early 2014 and my malnutrition slowly corrected itself. I gained most of my weight, but over the past year I’ve lost a lot of it again. My lanugo, unfortunately, seemed to fade a little but never really went away, and it’s gotten worse again lately. I mentioned it to my primary care recently, asking if I can expect it to go away, and he was fascinated, saying he’d never seen that before (yay! I love being “the interesting patient”). He seemed kind of amused, though, and scoffed at me, saying, “you can’t even see it, don’t worry about it,” to which I replied, “well, it’s obvious that you’re not a woman.” He couldn’t give me any more information other than that he thinks it should have gone away when my malnutrition ended, but since my BMI is still low, hopefully if I gain more weight it will disappear.
My weight remains the same and is the subject of some worry, and I still have lanugo. As far as problems go it’s low on the list, but it’s a reminder that things are not quite right with my body. I still have to shave (luckily, I only have to do it every couple of weeks), but even if I forget it’s not that big a deal. I’ve never actually mentioned it to another patient, so I don’t know if I know anyone who’s experienced it – if you have, let me know or chime in on Instagram! By the way, when I talk about negative things like this, know that I am in fact a happy person with a good life and a positive outlook (and you can be, too)! It’s not as bleak as it sounds.
If you’re experiencing lanugo, make sure to tell your doctor about this, because it’s a marker that you’re severely malnourished and your body has gone into emergency mode. Don’t be ashamed though – it’s not your fault. Don’t panic, just break out the razor, and know that you’re not alone.