IamA A rare genetic skin disorder that gives people tiger-like stripes AMAA!

Do a lot if people judge you for this? I personally think it's pretty cool.

Hello. I have never perceived anyone's inquiries or looks as judgement, but maybe I just don't pay attention to those. Mostly people are just curious, sometimes wary to touch it I suppose.

Hey there.

So... is there anything "wrong" with you? Does it affect your life other than the mostly-covered parts of you being differently-colored?

Just curious. I mean, usually, when you see genetic disorder there's some heavy stuff that comes with it.

Nothing as of yet. I have been told that I'm free from any other diseases or developmental issues having reached my current age in good health. I feel thankful for that.

Have you considered using your stripes as the basis for a tattoo or two?

Naturally they are very cool, however I could imagine that there would be some very creative tattoo artists who would love you as a canvas.

I have thought about it. I enjoy tattoos and I have one. The artist said the more pigmented skin was difficult to get ink into. I suppose you can always color outside the lines :) Know any good artists who might be interested?

That's great to hear, honestly I would think there are a lot of people judging you for that, but it's nice to see that you can rise above that and probably have a great group of friends that don't give a damn about your skin!

What kind of judgements do you think they would be? Thanks for the encouragement.

Nothing in particular, I just imagine that, especially growing up, any anomaly is an easy thing to be picked on for. You know, kids can be the biggest dicks. On another note, how has your disorder influenced your choice of clothing? Do you tend to wear long legged or sleeved clothes or does it not make a difference at all?

Yeah, kids.
I usually just wear whatever. If it's an unfamiliar place I might dress a little more modestly/professionally but I don't think that is solely because of the LWNH.

Has it ever stopped you from doing things? When I was younger I passed on doing a lot of outdoors-y type stuff because of it. Now not so much.

It was thanks to your post on that TIL thread that I finally know what I have! Thanks for this, and glad to know I'm not alone.

Mostly on my chest and back: http://i.imgur.com/wQ3WWsf.jpg

Also, are your eyes really sensitive to sunlight?

Wow, amazing! You are the first person I have "met" with LWNH. Thanks for replying.

It never stopped me from doing anything that I can think of. There have been those occasional awkward moments, odd looks or whatnot, as I'm sure you have experienced as well.
How old are you? I'm 31. Do you have any children? I don't but I heard there are some 'risks.' Do you have any other issues that might be associated with LWNH?

If you could have choose today whether to be born with that disorder or not, what would you choose and why?

Interesting question, I would choose to be born the way I am because it has given my life relevancy on reddit. (thanks the the TIL post) But really, who are we anyway?

The photo of your leg looks a lot like my leg!

I first noticed those spots on my feet on my teens and they've been slowly advancing up my legs.

My doctor didn't know what it was and it wasn't causing me any problems so I never saw a dermatologist, but I've always been curious what they are.

Did yours start somewhere and grow outward or have you always had them?

Images of my spots: Left leg http://imgur.com/a/rRiUU

Nice! I have seen some people with the same thing you have, the appearing lines/patches in adolescence or adulthood. Everything I have read (I'm NO doctor) or heard about LWNH usually appears within the first few years of birth and never changes. Mine has been the same since I was born.

Do you have those stripes in your face too?

I don't have any stripes on my face but I have quite a few freckles on my cheeks.

On your genitals?

https://www.youtube.com/watch?v=nUaXYYOl9JQ

I am stealing this from u/c_for

Are there any other clinical symptoms to LWNH or is it only characterized by the skin pigmentation? Does the dark pigment area react differently to sunlight? What's sunburn like for you?

Thank you for the AMA, this is a very interesting topic.

Thanks for your question. This is part of the reason for the AMA, it is difficult to find information about LWNH and I'm hoping some health pros will chime in.
I have read and heard of other potential issues that can occur at birth or that are common, the ones I remember are scoliosis, mental disorders (?) and brain aneurysms. I was checked for the melanoma gene mutation and had an eye exam because there was concern about a certain disease and my nervous system. My doc would not elaborate but the concern was there.

About the sunlight/burn: The pigmentation darkens with sun exposure and does sunburn. I seem to be more prone to sunburn and have been told to seriously pay attention to it. It's no problem, i'm active in the outdoors, I wear sunscreen and cover up when I can.

I have the same condition. Does the color get stronger as you age? I don't remember seeing these things on me, when I was a child (and I don't have them in any of the pictures from childhood).

Because of not using sunscreen, it seems that some parts of my skin are red brown throughout the year (other parts look similar to what you have).

Hello! I haven't noticed the color getting stronger with age, I have pictures as a kid where it is very clear. I have areas that generally get more sun exposure and are usually always darker. On my face I have freckles that are seeming to get more prominent but I think that's a normal skin aging thing.

Just curious... where do you live (what kind of conditions it takes, to get that stuff all over your body)? I live in North-East Europe, and have never seen anyone like you, nor have never had it all over my body.

It's a sporadic gene mutation, unknown cause. I'm from the US but I have seen other cases on the internet from India and a few SE Asian countries.

Have you found that your stripes have made you better at camouflaging into the woods or that the stripes have made it easier for groups of individuals with LWNH to hide their numbers when standing together?

Seriously though, I think this is kind of cool. Id like to think that this is more or less how evolution would have brought out striped humans.

It's never too late? I asked the doctor what the chance of me passing this on would be but have yet to receive an answer.

How rare is LWNH?

I think I read somewhere that it's at least 1/hundreds of thousands, but it is difficult to find any solid information. Most of the doctors or people who have ever heard of it just say "rare."

Are you a Mewtwo clone?

It is possible. I will look for my tail.

Has anyone ever reacted poorly to your skin?

Not that I remember. A boy in high school told me I was gross because I was so dirty after soccer practice but he didn't know the stripes don't wash off.

By high school he was old enough to know better. He was just being an asshole. I personally like the stripes. You look like a human tiger! Now does that make you a higer or a tuman? Huger? Timan?

Thanks. I'm not worried about it. People usually say tiger but I think I identify more with giraffes or zebras.

Giraffes are not striped though.

No, they are not. I have the wrong mutation.

Are they the same stripes everyone has but are invisible for people who don't have Linear and Whorled Nevoid Hypermelanosis?

Most of my stripes are on Blaschko's lines, yes. And I don't know why ALL the lines are not pigmented and some of them seem to be smeared. But how exact is an invisible line in the human body really?

How does it feel to be a rare skin disorder?

I don't have any other issues surrounding the disorder so I feel lucky. I also wonder about other people's experience with LWNH.

Do you have any other medical issues/concerns/complications that accompany or result from this disorder?

Not that have come to light. I was told that because I have made it this far (31 years) without any other complications I am most likely in the clear.

I would be very interested to hear from anyone else with LWNH on this.

Does it have any particularly positive affect on your life that you don't think you wopuld have had otherwise?

I'm sure I have met many pleasant and curious people whom I may have missed had this not occurred.

What was it like growing up with a skin disorder? Have you ever been resentful about it?

I never thought about it growing up unless someone commented on it and then I just shrugged it off and said, "I don't know, I was born like this." I guess that never really changed until a couple of years ago when I went to the dermatologist for the first time and figured out what was going on. Now I just have a better answer.
I'm not worried now, not resentful. I don't remember ever feeling any resentment. I never blamed my parents or threw a fit that I know of. I guess I liked being different.

There are about 390 academic publications on the condition, I'd recommend trying to contact an author of a case series as they've probably had the most experience.

Thank you very much. I had not thought about contacting one of the authors directly. I will consider it.

Do you ever crave red meat?

Not really. If anything it would be some venison jerky or maybe the occasional (every 5-6months) burger. How about you?

I ate at 5 Guys yesterday so I would say yes.

I was going to mention 5 guys but I didn't want to start a burger war.

I'm familiar with this as a sign of chimerism. Are you a chimera??

No, i'm not. At least if I am they didn't tell me when they got the test results.

In person does it look much different from vitiligo?

To me it does, but some people have been adamant with me that I have vitiligo. Vitiligo seems to have more stark/clear divisions between the light and dark areas, where this has a more textured appearance and irregular dividing lines.

Since I suggested you do this, I should get at least 10% for this as your new "agent"!

A post below suggested that it is a form of mosaicism: therefore, you have two sets of DNA. Have you ever had the DNA sequenced? (I wonder if perhaps this can tell us something interesting. I also wonder if it is just the skin cells that are affected.)

I have not had any genetic counseling yet. A form of mosaicism? I'm not sure because I read that underlying chromosomal mosaicism is not present in all cases of LWNH and when I asked about it they said it is uncertain. If they sequenced my DNA they never informed me. All the answers I received seemed a bit cryptic and a little confusing. I am hoping to get more clarity when I go back. My inquiries via email have gone unanswered.

If you or anyone else has genetics knowledge and can break it down, by all means.

http://imgur.com/H9Tz8mt The backs of my legs look like they have seams where one half is darker than the other half. (Apologies for the lousy photo, but I should get credit for shaving my leg.) It's the same on both legs. When I was a kid, I thought this was where I got sewn together, like my teddy bear. How did you explain your tiger stripes to yourself when you were a kid?

Cute story. I never had such a creative explain. I remember wondering if my parents were really my parents, if I had any special powers I didn't realize or if I was from a different planet.

Have you ever had a nickname connected with your disorder? Do your parents have freckles?

No associated nicknames yet. My parents do not have LWNH, or any skin disorders that I know of.

Do people usually notice immediately? I can see the stripes, but in person I would just assume its freckles or extreme sun spots until someone mentioned it.

I can't say for sure but I think it depends on the situation, what I'm wearing, ect. If we shake hands you'll probably notice it. Most of the time people think I was burned or have scars.

Were they more/less visible when you were a child?

They were always the same. I'm sure it threw my parents for a loop.

Does this stuff on my calves look like the same stuff? I didn't know this was a thing people could get. I've got vitiligo in a lot of the usual places, like my hands and feet, but then I've had this spotted stuff on the backs of my calves for years, and to a lesser extent on my ankles, too. Sorry for the bad lighting, I'm at my desk at work right now.

http://i.imgur.com/593uonR.jpg

The white spots surrounding the section on your hand look more like Vitiligo to me but I'm not a doctor. Sorry.

Was the pigmentation present at birth or did it start to appear later on?

Also, what happens when you get sunburned? Does the healed skin create the same pigmentation patterns?

It has been present since my birth. From what I understand, it is usually 'set' by age 3. When I get sunburned it is just the same as the other skin. The stripes do get darker with sun exposure and yes they sunburn.

I think this is rad. Are you a ginger?

No, brunette.

Hi! My question: how did you know it was lwnh? Like did a doctor diagnose you? And can it be mistaken for something else or are there disorders similar to it?

I actually have pigmentation similar to that around my left nipple. Growing up, my parents dismissed it at first as dirt, then when it didn't go away, they just said birthmark, but I never fully believed them. So because of this ama and yesterday's TIL, I think I may have it too. Thanks for the information btw!

Edit: forgot my picture http://imgur.com/G92BzL8 Sorry for the crappy iPhone quality!

I decided to finally see a dermatologist about a different issue a couple of years ago and they told me what it was. I have since seen another who confirmed it.
I'm not sure about what you've got there. In the TIL thread there was talk of something similar to what you have that was called by a different name and is removable. I think those appeared later in life for people and we're not present at birth so you might want to have it checked.

Have they darkened over time, or from sun exposure? My son has pigmentation that looks similar but lighter.

Just from sun exposure

Huh, I've never talked to other people with something similar to what's on my body! I have the same sort of 'freckly' 'blotchy' tracks up and down my arms,mostly. I've never really thought about them as anything negative and they've never been cause for pain or distress, just an odd pigmentation. It's kind of cool that they are probably part of this Blaschko pattern! Mine are usually very faint and light, but the darker parts tan more easily than the rest of my skin (which is pretty fair). Do your 'stripes' fluctuate with the seasons too or are they usually as dark as they are in the photos?

They don't fluctuate other than intensity of color. If they do it's something different than LWNH. If you think it is something other than freckles, and maybe even still, I would encourage you to visit a dermatologist and just have a look see.

Do you have the stripes since birth or did they eventually appear?

Since birth, yes. Always the same.