“Why are his eyelashes white?”

The blog recently got the following email:

“Hey! I was reading today’s post on your blog and realized that your son’s eyelashes are different on one eye from the other. Are they white? If so, do you mind if I ask why?” (post in question)

Yes, his lashes on part of one eye are white, while the rest are all a dark brown/black. The reason for that is because Ryan has vitiligo.

I was so sure when I got the email that I could just go and link to a post on the blog already about it, but then I realized that I never actually did post anything about it. It’s not that we are trying to cover it up, or even that he’s embarrassed by it, it just never really occurred to me to blog about it. We’ve had a few other issues come up with the kids that I never blogged about, more because unless someone specifically asks I don’t want to just put it out there and seem whiney. I can’t stand the blogs where the mom is talking about some new horrible thing that her child has or might have every week.

Last spring I noticed that Ryan had one or two lashes that stood out from his others, but each time I actually noticed I just sort of shrugged it off. (The first time we really noticed them was with the battery incident when I was trying to get a close up picture of his tongue.) However, by the end of the school year it was just a really sort of obvious thing. He had a wedge of them that were all white right in the middle of his lashes. I thought maybe it was a reaction to his Adderall, but couldn’t find anything saying that there was anyway that the two could be related.  I kept thinking “Hey, maybe you should take him into the doctor and ask him about it.” But I didn’t. I never noticed anything else changing, so I figured it was just some sort of weird fluke that led to his lashes changing. And they did keep changing. The white patch has slowly been growing over the past almost year.

It wasn’t until summer was ending and the school year had started that I finally decided we needed to take him in to be seen at the doctor’s. We had gotten really hot, red, and sweaty on a particularly long walk home from school and I was talking to Ryan about something and noticed that while the rest of his face was red all around his eyes wasn’t. And it sort of spread out, but not like in a sunglasses pattern (which he didn’t wear anyway) but in a sort of odd splotchy look. When I noticed this I went into full on freak out Mommy mode and called John, and my mom, and my grandmother (the nurse) for good measure too. They all said to call and make him an appointment to go in and see his doctor, because as my grandmother pointed out – skin color changes are never anything to take lightly. I called and we made an appointment to go in later in the week. That night, after much extensive googling, John and I came to the conclusion that it must be vitiligo, it was the only thing that we could find that fit. We asked Ryan to let us look over him to see if there were any other spots that we’d never noticed so we could know what to point out to the doctor.

That night we noticed it. How we never noticed before – since modest or shy Ryan is not – I don’t know. Ryan had these huge spots on either side of his hips and below his belly button that almost banded together around his whole waist of white splotches. This wasn’t a tan line. For one thing, it wasn’t an even line, some areas would go up way higher and way lower than others. Plus, he has an olive skin tone, and this was like almost a white blue and you could see where the spots ended on his legs. We also (once we knew what to look for) noticed small spots in several places on his back and on one arm. We were just shocked. How could we have never noticed this on him before?

We were very firmly sure about it being vitiligo at this point, so when I went in to take Ryan to the doctor and the nurse basically told me I was overreacting and that it was just an odd tan line and that his lashes were simply turning blonde I sort of wanted to hit her. Lashes don’t just turn blonde, and his aren’t blonde – MINE are blonde, I know what blonde lashes look like, and there was no way in heck that he just had an “odd tan line.” I called the doctor’s office back that same day and demanded to speak to the doctor – not the nurse – and to get an appointment for him to see Ryan. After just a quick look at Ryan’s eyes and hips the doctor very firmly agreed with us that it looked like vitiligo. He said that he had seen it before, but never in someone Ryan’s age before, and never had to make the diagnosis himself. He then set us up with an appointment with a dermatologist, and took a few blood samples because apparently it’s not uncommon for people with vitiligo to also have other autoimmune issues.

The dermatologist took one look at Ryan’s face when we got into the room and said “Oh yeah, that is definitely vitiligo.” She then went on to explain to us – well more she explained to Ryan – what exactly it is and what it isn’t. She told us how there are some treatment options, but how it isn’t something that is just going to go away. Even if the skin creams (there are only two, by the way that are FDA approved for use on children under 12) do make his spots appear smaller, they will just come back or show up on other parts of him. Plus, the creams can’t be used around his eyes at all. She told us with the lashes that they are constantly falling out and being replaced anyway, so while some are white now, they may eventually seem dark again one day. We were also told that if the creams don’t work we can move on to laser therapy when he’s older.

Well, the creams haven’t worked. Not even a tiny little bit. And after reading over all of the potential long-term side effects of the laser treatments, John and I have decided that until he is a grown up, and legally responsible for his own health, it isn’t even an option. It’s just too much of a health risk for us to make a decision to do for something that isn’t going to impact his actual health any. Plus, it might not even work, and if it does, the results can fade over time, and it’s a very extensive procedure. As of the last time we checked, Ryan is with us. He says he’s done trying things that aren’t going to work and that he’s fine with his spots and eyes. Really, this is what we want. We would much rather Ryan be OK with the vitiligo and accept it than always trying to find some way to fix it.

Now, in case you are wondering…

“Whether fair, dark, or any shade in between, most kids have skin that is generally the same color all over their body. But this isn't the case for those with vitiligo.

Vitiligo is a loss of skin pigment, or color, that causes white spots or patches to appear on the skin. No one knows exactly why this happens, but we do know it affects people of both sexes and all races. In the United States alone, an estimated 1 to 2 million people have the condition, and more than half of them are kids and teens.

The good news is that vitiligo — upsetting as it can be to those who are living with it — isn't medically dangerous. It's not a form of skin cancer, it's not an infection like MRSA, and it's definitely not contagious. In fact, most kids who have it are every bit as healthy as everyone else.”

(all information above and below from kidshealth.org – vitiligo)

And yes, if you are starting to wonder, it was vitiligo that Michael Jackson had that made him lose his skin pigment. There have been others with it, but he is the most common one that people think of.

A very simplified overview:

• Vitiligo is when the melanocytes stop producing melanin. (Meaning your skin stops producing the color)
• There are three types/classification of vitiligo: focal, generalized, and segmental.
• All races and all genders can get it. It effects about 2% of the world’s population.
• There is no firm cause of vitiligo. Experts have theories that it is caused by an autoimmune disorder or/and genetics.
• It can generally be diagnosed by a doctor just with a look, but on very fair people a Woods lamp may be used (basically like a black light).
• There is no “cure,” but there are treatments to even out the skin tone.
• The white spots can NOT tan – because there is no melanin – so you must be very careful to wear sunblock as they do burn very easily and are more susceptible to scarring from burns.
• While it is no way dangerous to your health, it can still be a very big deal emotionally.

Got any other questions for me (about vitligo or anything else mentioned on the blog)? If so you can always comment, or email me (lifeastheirmom@gmail.com), or go up to the “Ask Trish a Question!” tab.