Palmoplantar keratodermas (PPK)

[anniebagpuss]

this is not listed on the British skin foundation, our 11 year old daughter suffers will it. can anyone help out there............top tips etc would like to think there was at lest one other 11 year old with ppk.

[Hidden]

I sympathise with you but I dont really know about this condition. Try Google - he knows a lot.

[Shell567]

Hi anniebagpuss, you could try contacting the Ichthyosis Support Group (ISG). They have a main website and associated FB group.

ISG: ichthyosis.org.uk/

ISG Facebook: facebook.com/pages/Ichthyos...

* ISG PPK patient information leaflet: ichthyosis.org.uk/wp-conten...

[anniebagpuss]

Many thanks for this information google has some scary ramdon info on it!!! but i will look at the ISG website, many thanks again

[Emmay]

Professor Edel

O'Toole is an expert on ppK. There are several reasons why someone can have this condition including some rare genetic syndromes. I have ppk and would recommend that you get an expert opinion.

[anniebagpuss in reply to Emmay]

Hello Emmay, thank you for this information. i would love to know more about PPK im new to this site is there anyway that you can get my email address without me posting it on this public site( did not know if there was another way around it)

Regards

anniebagpuss

[Emmay in reply to anniebagpuss]

Hi, I am new to this site too. I do not think this site has a private area, but you could try contacting the site owner to ask if they could pass your email address to me.

Who diagnosed your daughter's condition? Was it someone who has significant experience in diagnosing PPK? Not all dermatologists have equal knowledge about the condition, and some have no knowledge at all. Has your daughter seen a geneticist?

I have punctate palmar and plantar keratoderma and the condition began to appear when I was in my early thirties. Unfortunately, my PPK is associated with a rare genetic condition, and as a result I have to be screened regularly for other health problems. I would urge you to make sure the diagnosis is correct. If it is, ask if there are any other potential health problems which could occur later in life which are associated with your daughter's form of PPK. Hopefully, there won't be any.

.

[ahilliard83]

I also have PPK... I am a 29 yr old. I have just recently found out that it was PPK. My whole life I have always been told by my grandmother and mother that its just extra skin. I was told the average person has 3 layers of skin and we have 7. I have finally begin to research it and try to find anwswers. I passed this down to my daughter who is 4 yrs old and I feel guilty. My grandmother had it and had 4 girls. Only my mother has it. My mother had 4 kids and 3 of us have it. My older brother and younger sister. My moms first child/older sister doesnt have it. My younger sister has 3 kids and 2 of them have it. I have one child and she has it. My brother has 1 child and he has it with another child to be born next week. My older sister who doesnt have it has 2 kids and neither one of them have it. I have tried to find support groups to no prevail. It seems like there is more studies going on in the UK then here in the US. I did read an article about a 74 yr old man with lung cancer and after he did chemo it was 95% cleared up. He also had a 49 yr old son who was affected with PPK and he elected to do chemo for it. After two weeks of chemo it cleared it by 95%. At a 4 yr checkup it was said to be still 90% cleared. I am curious about what kind of studies are going on and how I can keep updated of any new cure/procedures.

[anniebagpuss in reply to ahilliard83]

hello it was very interesting to hear how you have all been affected by PPK, our house is full of creams, bangages and socks to i can image you have an ongoing routine like us but mush more time needed!!

Our daughter is very new to PPK and we do find it hard, im unsure where you could go to in the US for studies etc and am unsure how your medical care system works, but at a guess i would think about tcontacting uni's for up and comming doctors and companys who make the products as they might know of others who could be interested. New Zealand skin care website i know our doctors refer too that too,have you tried there?

Good look with it all, post some photos that may help?

[clare90]

hi hun my parnter and my daughter have epidimolic dyfuse ppk not sure i spelt it right lol its hard when noone els not even drs have heard about it my lg is on 2 so no problems with it as of yet but i can see what will happen looking at my oh did she inherit her or it the mutation form i know this is and old post there is a support group on facebook if you have it they are amazing so many different types xx