My Story About Living With Linear Porokeratosis...

As many, mine started as a small child. First, a small circle on my hand. Then the lesions crept up my arm, wrapped under my armpit, and down my trunk. It seems the older I get, the more the lesions spread. As a small child I remember spending many hours in the specialists office. They would take samples, freeze spots, and I think they must have taken a thousand pictures. At around 10 years of age I decided I didn't want to be a guinea pig any more. I stopped going to the doctor. They all said their was no treatment, so I was done having them try everything under the sun on me.

In my mid-30's a couple of the lesions would not heal. So, back to the specialist I go. This time, they take tissue samples and I am diagnosed with squemoush cell carcinoma (cancer). I had the Moes procedure done on a couple of the lesions, but after having a panic attack through the last one I opted to have a skin graft on the rest of the arm. I know, it sounds drastic, but it was the right decision.

Instead of having up to 50 moes procedures, I had one full-thickness graft. The arm looks better than it did before with the porokeratosis.

So, if you have linear porokeratosis, and the lesions won't heal, PLEASE have them tested. Squemoush cell carcinoma can spread to your organs.

Thanks for reading.....
cmbrentano cmbrentano
1 Response May 14, 2012

I am 28 I have had it since child hood also it's now spreading up the back of my arm. I just got diagnosed after being told by many different drs that it was just a bacterial infection in my skin and all kinds of stuff even though I had told them it had been there for so long. Anyway the dr that diagnosed me with Linear Porokeratosis took forever to figure it out and promised me that it won't spread past my arm even though I showed them the pigment loss spots that come first on my chest. He said it must be something else. The Dr said there's no treatments available and there are no dangers to worry about with it, he said it's just kind of like a mole under the skin and nothing will ever happen with it not to worry and said we no longer have a need to see him any longer. I think he lied to me.