Alopecia Universalis

After the birth of our baby girl in 2020, my wife started noticing her hair was falling out. She could basically pull on it a little bit, and it would give way. The Roomba certainly took notice too; I started noticing the unit getting jammed up with unusual amounts of hair.

Honestly, I didn't think much of it initially. The past couple of months had been pretty stressful, especially for her; the baby was breech, so they did this thing where they try to flip the baby manually before the due date. Like a team of nurses pushing and pulling on her stomach. It was absolutely awful to watch. I felt like throwing up. Apparently, it didn't feel too great for her either. The idea was to see if we could avoid a C-section, but no dice. We couldn't get our little sweetheart to turn around.

The C-section went smoothly, but then began the sleepless nights as we helped our little honey ease into the real world.

In the mornings, I'd pass by the bathroom and watch my wife comb through her hair and examine her scalp. At the time, it wasn't really hitting me, but now, writing this, I have this sinking feeling in my stomach. She was losing her hair, rapidly. Strands became clumps, and clumps became patches. But I somehow thought it would all blow over, that it was temporary.

Spoiler: it wasn't.

Whether because I didn't accept it, was preoccupied with the new baby and starting renovations on our new home, or whatever the reason, I really don't know. Bottom line, I wasn't emotionally available for her in the way that she needed. I wasn't getting it. She was losing something that gave her confidence to physically face the world each day. I know that now, but at possibly the one time she needed me the most, I was there, but not there.

I'll never be able to shake the feeling that comes with reflecting on this. Choked up is how I would describe it.

By the time I realized what was actually going on, she was fully bald and visiting various doctors for tests and opinions. This was a situation. I assured her I still loved her any way she was, but this still wasn't what she needed at the time. I told her that we'd find a way to bring it back, that she was beautiful without hair, etc.

What she needed was validation, and eventually, I became her champion.

My wife has alopecia universalis: she's tried all the things. And the one that worked the most, and then pooped out, was Xeljanz. But right now, she's done being poked and prodded. She just wants to live a normal life. How can anyone blame her? Some people get it, and some don't. Some people will say, including those closest to her, that we should try more, try harder, try sprinkling garlic on your head, or some shit.

And some are sweet, validating, and even inspired by her to take off whatever head covering they are wearing and just be themselves. She's considering using her expertise to help people specifically with her condition. She's already helped a couple out, and the results have just been awesome and beautiful. I'm so fucking proud.

So what did happen to her hair? Her hair cells were attacked by the immune system, most probably. That and the chain of events I described above are all we really know.

We had a conversation last night about how some of my work with machine learning can potentially help her and those with her condition. I don't know, but I have some people to contact.

Out of time, stay tuned.