What are the odds?

Here are some statistics about PRP.  

The chance of getting PRP is about 1 in 400,000 (Clinical Dermatology, By Richard Weller, John A. A. Hunter, John Savin, Mark Dahl).  That is about one person in a population the size of Malta.

(All other stats taken from DermNet NZ)

There are different types of PRP;

•       About 50% of those with PRP have Classical adult onset
•       About 5% of those with PRP have Atypical adult onset
•       About 10% of those with PRP have Classical juvenile onset
•       About 25% of those with PRP have Circumscribed juvenile
•       About 5% of those with PRP have Atypical juvenile onset
•       And there is also a HIV-associated variant

This table represents this split, with each square representing 5%:

The only types I could have are Classical adult onset or Atypical adult onset, so I think my chances of having Classical adult onset are 90.91% (10 out of 11) while my chances of having Atypical adult onset are about 9.09% (1 out of 11)

For those with Classical adult onset, 80% will have spontaneous remission within 3 years

For those with Atypical adult onset, the condition may persist for 20 years or more.

Shedding

After a 3 hr drive where I could see lots of skin fall off my face and arms, I undressed in the bathroom, rubbed my arms and legs and swept up about 9grams of skin 

Wet tshirt and the contents of my bed

No real change since last weeks update. I do have a sore ear, I went to the walk in centre who looked in it and couldn't see anything wrong. 

Still no biopsy results.  

I returned to work today, working from home, next week I plan to be in the office Tuesday to Thursday which will mean 4 nights away from home.  This will be a challenge as I will have to bring everything from bedsheets, to medication & emollients to my own DustBuster.  We shall see how it goes. 

This is my wet t-shirt look after being covered in the paraffin emollient 

This is what my bedsheets look like in a morning 

The Cruelest Things

Here are some of the cruelest things about this disease, from my point of view;

When I was 19 my mother died of leukaemia, and ever since I have worn my mothers wedding ring on a necklace.  When I have been feeling down, for whatever reason, just holding the wedding ring has helped me.  Unfortunately my skin is now so sensitive I can't wear it any more.  Just when I need it most.

I have had to move into the spare bedroom as my shedding and itching means there is no way me and my other half can share a bed at the moment.

I have 2 holidays lined up this year, one is an annual long weekend away with a group of friends, and the other is a once in a lifetime fortnight in Thailand which my other have has been planning for over a year for my 40th birthday next month.  I haven't cancelled either holiday yet but the is a BIG question mark over both.

G-string or sock?

At the moment I am going into a local hospital everyday (except Sunday's and bank hols) to be covered in 50/50 paraffin emollient.  The first few days it was tops off, covered, top back on, then everything off below the waist with both hands self consciously covering my bits.

After a few days I relaxed and it seemed more practical to whip everything off with one hand covering what needed to be covered. Then after a week or so of this one of the nurses passed me an odd wrapped package which turned out to be disposable pants. Was I supposed to be wearing these all the time?  No one told me.  Oh well, disposable pants from now on.

I have also started light therapy.  Standing in an upright tanning booth every other day.  The only bits to be covered are my ....bits.  The nurse said I could get a g-string but just tucking everything into a dark sock should be okay.  So first time the sock method worked fine,  the second time just as the lights went on the sock fell off.  STOP!!! I shouted as I didn't know whether to replace the sock, cover myself with a hand, or just get a tan on the little fella.  Thankfully they stopped while I the sock was returned to its rightful place.  But now going forward I have to decide.  Do I find a sock with a tighter grip? Or do I go g-string shopping?

This time it's personal

I stared with a timeline of symptoms which I stored on my iPad ( using the Evernote app if your interested).  The point was to show the Drs and dermatologists, and to keep track myself.  

Then I transferred this all to this blog, with backdated posts.  I did this because PRP is a rare disease and there's not much out there.  

But there are other things I want to say about how I'm feeling/dealing with PRP, and I might start posting these as well.  I feel I need to do this for me.  

So you have been warned

In the meantime here is a get well soon drawing from my nephew. Love how he spells Kev with a C

Current symptoms update

Handheld Vac which had been emptied less than 24 hours ago

• Skin shedding allot particularly, upper body.  The full size Dyson and the handheld vacuum cleaner are both required to be emptied out every 2 or 3 days
• Palms of hands were leathery now starting to peal again, and can be quite sensitive to sharp edges.
• Soles of feet are shedding a bit but not sore
• Face is very flaky, lots of hanging skin around the eyes
• Itchiness is still there and very severe allot of the time, but i no longer feel it is completely taking me over.
• Sleep is generally allot better than it was.  Most nights I am getting enough sleep. I am no longer apprehensive about going to bed.
• Nails are fine.
• Temperature control; difficult but not unbearable.  I seem to feel cold when others say it is warm.
• Shivering, for a few weeks I was shivering uncontrollably for an hour or 2 every evening.  I wasn't sure whether this was due to lack of sleep or feeling the cold.  I have not been shivering since Sunday.