They Call Me Kitty Because I Have Spots.

I'm 21 and have lived with urticaria pigmentosa my whole life. It appeared 3 months after I was born and was all over me except for my face. I had been told my whole life that it would be gone when I hit puberty or when I turned 16 / 17.



Well they were wrong. I still have it, it's still everywhere, just not as bright as when I was a child. My dermatoligist flat out told me I was a freak even for this condition. I did some research after seeing him and learned that most people will have only blotches of it, not the million little spots I have. I was told not to get a tattoo because my skin may just blister up and peel off (which I was wondering if anyone with it ever got a tattoo to know what would happen) which was the only reason I wanted to see him in the first place. I didnt need to be told that I was more of an anomoly than I already knew. Because I've had it for so long and with no major sign of clearing up, he wanted to do blood tests and other tests to see if I had it internally on my organs. After he mentioned that i began to wonder if my spots could be the cause of my troubled digestive system.

I give a lot of credit to my parents for being strong enough for me growing up with it. My dad turned urticaria pigmentosa into a little song so that I would remember what it was, because the school nurses always failed to remember what it was and frequently liked to point out that I had a rash and wanted to make sure I was aware of it. in fact, most of my life has been licked with depression due to people feeling the need to point out that I have a rash of some kind and relate it to their life. Once while working retail I had a mother point at my calves and tell her daughter "look hunny, she has the same heat rash you do!" The look on the mothers face when I told her I didn't and that was just my skin was priceless.



That is one thing no amount of good parenting can prepare you for. The stares. I can't stand being in public in my bathing suit because of my spots. They are not in one local area of my body that I can hide. They are everywhere. My friends and boyfriend love them, they tell me they are "cute." I dont see them as cute at all personally but it makes me feel less alienated.

What I was wondering is if anyone knows if it is genetic? While I am in no rush whatsoever to have kids, I don't think I would even bother if their was a pretty good chance they would have it too. I wouldnt want any child to have to grow up dealing with it. Children are rough on appearances, and adults are close behind.

theSpottedLoiterer theSpottedLoiterer
22-25, F
8 Responses Mar 4, 2010

Hi, I am a 25 year old mother of 2. When I was a child I had all of the welts and blisters and rashes etc that come with it, but the key thing throughout was to ALWAYS avoid the heat, never take any of the medications (asprin, morphine, codine, etc) that we are told to avoid, and never scratch! The older I got, the more I learnt about my skin condition and how to control it, and the symptoms gradually decreased with time. <br />
The thing for me that caused a HUGE change in the symptoms was my children! As soon as I was pregnant with my first baby, and especially after he was born, I noticed a DRAMATIC improvement! I am still to this day unsure exactly why this helped but am forever grateful that I don't have to deal with it quite so much anymore! I do still have the odd outbreak of a rash if I have a fever in the summer time, but I have found that if I keep myself as cool as possible and take some Anti-histamines as soon as I feel the rash coming on, it works wonders for me and is completely gone within a couple of hours! My skin still looks a little odd if you look closely enough, but for the most part it just makes me look like I have a good tan all year round! And I do still have to avoid certain fabrics that are rough or itchy like lace, etc, to avoid my skin turning red, angry looking and itchy, but over-all, it really doesn't affect my life too much anymore which is wonderful! <br />
All information that I have been given by specialists and reseached myself is that it is NOT genetic. Both of my children and happy and healthy with no signs of any skin problems at all. :)

to jolayne. <br />
<br />
Being that she is only 17, that may be playing a larger role in her being unable to get a job depending on the underage working laws in your area, more so than her spots.<br />
<br />
At that age it is very hard to love them and accept them as something beautiful that only adds to you. At 22, I still find this as something hard to do from time to time, especially when you deal with them your whole life. It's not easy to always deal with how people react to them. You need to not let them get you down all the time and be strong through the strange looks and questions she may get. If she shows confidence I'm sure even employers will look past it. Most places I've worked at haven't even noticed them or thought they were freckles. A big part is how you present yourself. For most of my life I kept myself very covered so no one could see them, now I'm more comfortable and how I dress shows. I'm not afraid to wear to wear shorts or tank tops, I'm still not very comfortable wearing a bathing suit around people I don't know, but it's getting better.

I can relate, my daughter is 17 years old and full up all over her and we were told it was to go away in her high school years, we still do not see any inprovement at all. Any advise, she is also having trouble finding a job because off her spotts.

I can totally relate girl. I am 21 and have had u.p. since I was just six weeks old. Though my spots have faded a little, they definitely did not disappear during puberty as promised and I have a feeling I will have to live with it forever. It has hindered me my whole life...I won't even wear a tshirt out in public I'm so self conscious about it. I am considering getting tattoos also. While I don't know if it's genetic or not, I had a daughter three years ago and she does not have u.p. Has anyone ever looked into any possible alternatives or treatments? Skin bleaching or anything? Good luck to you all...I feel your pain. :(

I am 48 and my experience has been the same as yours--and sadly, though my lesions have faded, they are still too much there to walk around bare-skinned. Apparently, the condition is not genetic but I wonder if one does have UP if the genetic marker might not be passed on? I never had kids, just in case. Frustration abounds now, for even though I live in a large city, it seems my UP is going systemic, targeting my bones and/ or bone marrow, and I cannot find a doctor that can help.

I am 48 and my experience has been the same as yours--and sadly, though my lesions have faded, they are still too much there to walk around bare-skinned. Apparently, the condition is not genetic but I wonder if one does have UP if the genetic marker might not be passed on? I never had kids, just in case. Frustration abounds now, for even though I live in a large city, it seems my UP is going systemic, targeting my bones and/ or bone marrow, and I cannot find a doctor that can help.

I am 48 and my experience has been the same as yours--and sadly, though my lesions have faded, they are still too much there to walk around bare-skinned. Apparently, the condition is not genetic but I wonder if one does have UP if the genetic marker might not be passed on? I never had kids, just in case. Frustration abounds now, for even though I live in a large city, it seems my UP is going systemic, targeting my bones and/ or bone marrow, and I cannot find a doctor that can help.

I can completely relate with how you feel...I am a few years older than you are (27) and can honestly say that as you get older and more comfortable with your body, in many ways, the anxieties and embarassment ease. They are by no means gone and I am always thinking about them when in a bikini-no matter how fit and toned I am- they just seem to jump out. But it really has gotten easier to deal with and accept. I have also had people ask if I had a rash or something...**** ya off wha??<br />
I do seem to get the spots localized in areas of trauma like a burn or cut...not sure if that is a common thing?<br />
As for tattoos, I have a huge one on my leg and plan on many more...no blisters or rashes or falling off skin. And they cover dots quite nicely! ;)<br />
About the children thing...I don't think you should let this stop you from having them! It is a beautiful gift and even the greatest people in the world have something they(or others) don't like about themselves. YOu can just teach them from first hand experience how to deal with hit :)<br />
<br />
All the best my spotted friend,<br />
<br />
TTLMD :)