I Have "piebaldism"; Anyone Else??

[sue1234]

Okay, I was reading around the net about MCAD. The stuff I've been reading around here on people's symptoms, and on another site, sure sounds like me.

So, as I was searching around, I ran into this research study on mast cell "disorders" at NIH:

http://clinicalstudies.info.nih.gov/detail/A_2009-I-0086.html

Anyway, one of the criteria is a history of "piebaldism". That is ME!! It just means that you've gotten a patch of white hair, usually in the frontal area of the head. I have had a white patch that started when I was 29(which was 22 years ago), and it progressed to all of my front "bang" area. I always thought it was one of my quirky things, like I mentioned in an earlier post.

Now, I see it is actually a sign DIRECTLY related to mast cell issues! I am definitely going to have this issue checked with me, but living in Louisiana, I have no clue who to go see. I know it should be experts, but realistically, I can't go up north. I am limited to Houston. Anyone know a a good allergy/immunology doctor in Texas??

[sue1234]

Well, actually piebaldism looks like it appears at birth or in children. Mine started at 29, so maybe it is related or connected? I know my mom always said I got the white streak just like my great aunt.

[faint factory]

I do, yes. But yeah, you have it at birth. I don't even know what MCAD is. Guess I should check.

[issie]

The white streak is also a sign of Cherokee Indian gentics. Do you have American Indian genes in your family?

[sue1234]

Issie, I don't think so, as no one has ever mentioned it when talking about family history. If I did, it would be a very small, diluted gene pool. I wonder what makes it prevalent in them?

I was always thinking that my early gray hair was a copper deficiency, and lately I've seen tyrosine connected to pigmentation. So, I don't know. Maybe copper and/or tyrosine are related to MCAD?

[lieze]

Sue I also have the white patch right in front.

It's weird how it hangs out right there.

I do have native somewhere in my past.

I also heard widow's peak is another sign of native blood and I have that also.

[faint factory]

Someone translate this for me.

http://www.nature.com/leu/journal/v12/n2/abs/2400906a.html

[sue1234]

I can't explain it, but I've been running into the same type articles, something about the "kit" gene. It is somehow related to mast cells, piebaldism, and I did read one place where it talked about "...endothelian factor...". So, it has all piqued my interest!

[faint factory]

Thanks for making this post! I had no idea whatsoever that my piebaldism might be related to all of this. It seems impossible that I could have all these rare conditions without them all being related so it seems like MCAD might be the link. Like I said, though, I know nothing about MCAD.

[babettess]

Very interesting!

I'm another with white bangs. Doesn't go to well with the rest of my almost black hair. I've always called my bangs my "skunk steak" because if I didn't color my hair I would look like a skunk. I do have Cherokee Indian ancestry and a very pronounced widow's peak. I also seem to have symptoms suggesting MCAD. My brother has the variations in skin color mentioned in piebaldism but no problems connected to MCAD. Also I have EDS and PoTS and he doesn't. Just thought I'd mention that.

Babette

[issie]

I just read the article about what piebaldism is - I didn't have it at birth - but I have vitiligo now. It looks exactly like the white patches in this illness. I have totally lost all pigment in a lot of places all over my body. It's good I'm fair skinned because it doesn't show bad. It can however reach your head and where ever the pigment is lost the hair goes totally white. Don't know if there is a connection with vitiligo and mast cell. Also, one of the articles I ran across on this talked about NF neurofibromatosis - I had a doctor from Life Extension say that all the cases he has seen of pOTS he could usually attribute to this. But, a few years ago - I was checked for this and was told that I didn't have it. But, I have lipomas and meningiomas and ... and . . . and you name the type of tumor or cyst and I have it. Wonder if there is a connection. I do feel that I have mast cell issues and I have the angioedema - I violently react to 1/2 of a shrimp. My face and lips and throat swells shut and I'm unrecognizable. I swell really bad in my hands and ab. It's fluid I think, but can happen really fast and I never know why. You may have hit on something - just maybe a variable of this. Worth pursuing.

[Birdlady]

My mom and her mother both have/had the white patch of hair in the front. Neither of them had any other white patches on their skin, so I think that rules out vitiligo. It only started later in life, so I don't think it is piebaldism, but I'm not sure if it was ever investigated. I'll have to ask my mom. My mom though does not have POTS at all. She is so active it puts me to shame.

Funny story. My mom does not dye hers. As as a little kid, I would always be able to find her in a store because of that white patch. It saved me from getting lost a few times when I didn't keep up. HAHA

Added: I did a little digging and it sounds like poliosis. The cause can be unknown as far as I read.

Here's a link though I found. http://dermatology.cdlib.org/142/case_presentations/poliosis/young.html

The literature regarding poliosis of the scalp has been dominated by case reports. Poliosis has been associated with a variety of diseases, drugs, and lesions. These include Marfan syndrome [1], Vogt-Koyanagi-Harada disease [2], sarcoidosis [3], herpes zoster [4], and alopecia areata [5]. Drugs, including chloroquine, cyclosporine, and topical prostaglandin F2α analogs [6] have also been reported to cause poliosis. In addition, poliosis can overlie lesions, including neurofibroma [7, 8, 9], giant congenital nevus [10], congenital intradermal nevus [11], nevus depigmentosus [12], halo nevus [13], nevus [14], and melanoma [15, 16].

Why this occurs is curious. Is it caused by destruction or dysfunction of melanocytes? Autoimmune and inflammatory diseases can damage melanocytes, and may explain why poliosis is associated with diseases such as alopecia areata, and herpes zoster, respectively. But what about poliosis associated with drugs? What about it overlying melanocytic lesions? Are melanocytes displaced? Do nevus cells take up melanin? If so, then what is the explanation for poliosis when it is associated with nonmelanocytic lesions such as neurofibromas? The pathogenesis is not known and is likely multifactorial.

[sue1234]

Well, I see it talks of congenital nevi. My daughter was born with a palm-size tuft of jet black hair that was all about 1-2 inches long. It was odd, to say the least! But, it was over a giant group of blue-black nevi. When she was 8, doctors in Houston did some new-fangled thing(back then) where they stretched her scalp skin for 6 months using saline implants, then surgically removed that patch of hair/nevi. It must have been a rare event, as the head of the plastic surgery, himself, handled the case and documented everything by taking pictures from first visit through surgery. They said that one of them could turn into melanoma and be too hard to watch over the years due to the hair.

Anyway, it looks like it is part of all this related somehow to my white patch.

[Sarah4444]

This is really interesting. I also have vitiligo on my leg - in the reseach trial in the first post they mention depigmentation of skin and hair as being related to mast cell disorder.

With regard to finding a doctor for this, I don't even have an allergist or immunologist in my community but from what I have read on the forums they often don't know much about mast cell disorders, MCAD in particular. On the POTS thread on the Mastocytosis Canada forum there are names of some of the mast cell experts, and you could also ask at a US forum. It's still a poorly defined and controversial area.

[issie]

This is really interesting. I also have vitiligo on my leg - in the reseach trial in the first post they mention depigmentation of skin and hair as being related to mast cell disorder.

With regard to finding a doctor for this, I don't even have an allergist or immunologist in my community but from what I have read on the forums they often don't know much about mast cell disorders, MCAD in particular. On the POTS thread on the Mastocytosis Canada forum there are names of some of the mast cell experts, and you could also ask at a US forum. It's still a poorly defined and controversial area.

I saw a dermatologist - but didn't have the auto immune connection looked at and didn't realize that there could be a mast cell connection. (By the way - I got joined up on the Mast Cell Canada site too. Good info there also.)