Thread: Pityriasis Rubra Pilaris - PRP - anyone have it??

Ouch. Hope it’s not affecting too much..

There is an international support group for PRP. Sending PM.

Originally Posted by bob10

There is an international support group for PRP. Sending PM.

Thanks Bob, I have looked into a couple of the groups, 1 of the one's you posted.

Do you know of it or someone affected by it ???

Thanks and Cheers Ean

Originally Posted by Ean Austral

Thanks Bob, I have looked into a couple of the groups, 1 of the one's you posted.

Do you know of it or someone affected by it ???

Thanks and Cheers Ean

No. However friends of mine have similar problems from their Vietnam service. Whether it is related, I don't know.

Originally Posted by Tombie

Ouch. Hope it’s not affecting too much..

Gday Tombie,

Its certainly forced me to make some "adjustments " to my day to day life.

There are people with far worse health problems than me.

Cheers Ean

Thanks for sharing Ean. I don't have it I hope. How does it effect you and how do I avoid it?

Originally Posted by cuppabillytea

Thanks for sharing Ean. I don't have it I hope. How does it effect you and how do I avoid it?

This is in the words of the specialist I see.
We don't know how or why people get it , and we don't know how to cure it all we do is manage it. expect to have it for 1 to 3 years.
Approx 1 in 400,000 people get it , male - female or children it doesn't discriminate.

So 1 day if you wake up and start to turn redder than a tomato and in the next week all your skin starts falling off, and no local doctors or even the emergency department at hospital cant tell you what's wrong , but we can tell you its nothing sinister and wont kill you.... Chances are you have it.

So in a Nutshell... 6 months in and lucky for me my head and face have come good , I am totally red from the waist down , I loose a layer of skin every 10 days or so, worse is my hands and the soles of my feet , they go hard as leather , then the skin just peels off . I only just started to sweat again about 3 weeks ago , but only on my head , sounds good but I cant control my body temp and heat is 1 of the worst things for this condition. I have to drink about 6-8 ltrs of water a day because I dehydrate without realising and I apply moisturiser about 5 times a day. Its not the best condition to have anywhere but in tropics is just another level again. I cant stay in the sun as with the new skin I burn very easy so that's just another issue to deal with in day to day life.

So I wear ice vests when I work outside , basically covered from head to toe in the sun, but recently found my hands burn even just holding the steering wheel , so now wear gloves most of the time.
"BUT" apart from the stares from people and basically living with a vacuum cleaner following me around , I am in no pain so I just get on with life. I should invest in shares in the moisturiser company as its crazy how I much use.

My sympathy goes out to any person who has a child that gets this condition as its tough enough as an adult but it would be devastating for a child.

Cheers Ean

Just read up on the condition at rarediseases.com. Geez Ean, that’s gotta be tough to cope with!