Cafe Au Lait Birthmark

[mikoal1]

Hi there, I have a few questions regarding the birthmark that I have.
Please bear with me, this is a lengthy email and I have mulitple questions.

First off I would like to describe this birthmark.
- It is large in shape, covering my right chest, to my right shoulder then half of my right bicep to the elbow, then there are some spots showing on my right wrist.
It is darker in color near the shoulder/bicep area and lighter in the chest and elbow area. I believe it has the coast of maine border which is jagged edged. The birthmark stops at the center of my chest, and does not go below my right nipple.  Also to note the borders of the birthmark, have some insignificant raised bumps, I'm talking about less than goosebumps, and anyone with imperfect skin would have them,  they are hardly visible, and are detected by a delicate touch.
The raised spots are on the border and the newly forming areas (between the wrist and elbow)
I am now 27 years old and lived with it for as long as I can remember, but recently i've noticed the birthmark to be growing a bit so here are my questions/concerns.

1) can/do birthmarks grow? Can it be irritated by scratching or sunlight exposure? I had very little on my arms (wrist to elbow area), then i noticed it spreading throughout the years (4-8 years), I cannot tell if it was from irritation of scratching or sunlight or what? Is this normal?

2) Is it McCune Albright syndrome? I only qualify for 1 of the 3 categories, I dont believe I have any bone disease or premature puberty occuring. Can I have a Coast of Maine birthmark that is so large and not be a McCune Albright syndrome?

3) Could this be NF1? (Neurofibromatosis type 1) or any NF? From my knowledge, I do not have

-Two or more neurofibromas on the skin or under the skin or one plexiform neurofibroma (a large cluster of tumors involving multiple nerves); Neurofibromas are the subcutaneous bumps that are characteristic of the disease and increase in number with age.
Or
-Freckling of the groin or the axilla (arm pit).

Or
-Skeletal abnormalities, such as sphenoid dysplasia or thinning of the cortex of the long bones of the body (i.e. bones of the leg, potentially resulting in bowing of the legs)
Or
-Lisch nodules (hamartomas of iris), freckling in the iris. Tumors on the optic nerve, also known as an optic glioma

4) I've been experiencing full body itch, and couldnt find the cause of it. I went to the doctors for a checkup and they took blood samples and tested and there was nothing wrong with me. I cant tell if the itch is a habit or an itch now.....i've scratch for a month or two, leaving scars on the areas i've scratch, but the scratching have subsided, and I do notice it was somwhat related to stress, but at a point I thought it was Hep B, or some sort of liver failure, but Ive tested and came out clean. Like I said I've stopped scratching for now, and i just wnated to know what caused that? I didnt switch clothing, soap, detergent, diet, place of sleep etc.

5) And if everything turns out great, I have this final question, can such a large birthmark be removed, and removed in a such a way it looks......natural?
Like I said I've been lviing with this for over 20 years and until recent I've started doing some online searching.

[Moons_Ad]

Hi!

I bumped into this post while searching for info regarding cafe spots. I am a new first time mom of a 4 month baby boy who has cafe spot from shortly after his birth. It's there on half of his neck and on chest it's coast of Maine with jagged edge. I am pinning hopes it's nothing just like urs. Apart from that, I am worried how he wud be teased in school..we are south Asians, none in my or husbands side has it..I am a late age mom ( I am 36). . I have few Qs if you can answer it may help my anxious mind:

1. Did ur cafe spot appear shortly after birth?
2. Throughout ur childhood did any of ur ped's got concerned about it ever?
3. Did any doc mention genetic testing for MAS?
4. Is there a difference between segmental hyperpigmention and cafe au lait spots?

I am worried mostly because it's coast of Maine  order.. Our ped says he is too young to speculate anything.. Baby does not have any spots elsewhere on hid body but he is darker in color except his face..

Thanks!

[mikoal1]

Its 2 years later,  but wanted to thank you for your feedback.
Even though it has a name like segmental pigmentation, it sounds really close to a cafe au lait spot.
Once again, thanks.

[chopra]

Hi Mikoal. I'm 26 this year, Asian. I have this kind of birthmark too and I think your description fully fits into mine. Do you have a image of your birthmark?

Apart for the occassional stares from public when I go for sun-tanning/swimming, I don't have any problem with this birthmark.

Rgds,
Tang

[pinkpapaya2003]

My daughter has the same exact markings. She is 5, I first noticed the mark on her first trip to the beach, she was one. It was the size of a quarter on her shoulderblade. Everytime she went into the sun it seemed to spread. I grew worried by the time she was 2 1/2 it had spread up to her shoulder but not past her spine/midline. I took her to Dr. Bernard Cohen, pediatric dermatologist at Johns Hopkins. He said he thought it was a cafe au lait, but asked us to come back in about a year. Over one hear later her mark had spread down her arm, both front and back sides, looks like her elbow has been dipped in dirt. It stretches across her chest, stops at her midline.

We returned to Dr. Cohen and he said my daughter has Hyper-pigmentation, Segmental pigmentation disorder. It's not considered a birthmark, its an issue with the melanin in the skin. My daughters skin is very fair, sunlight always seems to bring out more of the area and darken the skin. The winter time her skin fades but it remains a darker color. Doctor said the color isn't really spreading. The skin was determined its color before you were born, environment and age play a role in the changes. These factors also bring out the pre-determined colors.

We are not sure how much of her skin will be effected, he does not think it will cross over her midline. So far it covers the shoulder and back quadrant plus her arm, past her elbow, mid arm. They have cream and laser lightening treatments for lightening skin pigmentation, because there are social factors involved with markings like this. Of course I will let my daughter make the decision on her own about how to proceed, even so, she is way too young. She tells her friends the mark is special because an angel kissed her when she was in my tummy. She is also learning about adversity, she knows its different and doesn't really let anyone have an opinion about it.

**I asked about all of the crazy stuff I found online, neurologic issues, cancer. He told me she would have very obvious health issues. Generally the birthmark is secondary to the other problems involved. Not and indicator of a problem.

We are now part of a study at Hopkins for this disorder.

I hope my information was helpful.

[mikoal1]

Ill try posting one more time, thanks everyone

[mikoal1]

Any help will do thanks

[mikoal1]

Please this is urgent

[mikoal1]

Can Anyone help?