Oh Kacy, great idea, don't hear alot from EHKers
*Your name: Pauline Black
*Affected famiy members: Just myself
*Unaffected Family members: older brother and sister, and mother No evidence in my family tree either
*Ages: Myself 42, Daryl 45, Cheryl 47
*Type of EHK (KRT1,KRT10,other,don't know)
I think KRT10, not sure...but definitely a spontaneous mutation
*Describe characteristics of your skin:
Palmoplanter (Very thick)
lower legs, greenish scale
scale ridges, in the usual flexure regions
fine layer of light brown/yellow scale on other parts of arms & legs, chest, neck, face (when not on Accutane)
seem to have alot of erythroderma Very red on inside of arms
white flaky skin also where erythroderma is
Cracking in palms of hands only when over used, or in winter
Feet no longer crack for past 7 years or so...very strange, but great
Daily Blistering...from every day water blisters, to occasional blood blisters, and deep seated pus blisters/borderline infection
yeah my skin heals remarkably quick also...
very thick horny elbows...
*What do you do that works:
I soak in salt baths, kills odour, and generally reduces scaling
Apply cetrimide cream...very smooth white cream, has anticeptic element in it (cetrimide)
50% Soft white Parrafin in 50% liquid parrafin, for palms of hands, (minimise cracking each day) used at bedtime foloowing by cotton gloves... and use this ointment on other parts when extremely dry, or with raw sores...
Hamiltons Shower Body wash...soaps not good for me...this is great, and helps kill bacteria, from sleeping all night
A REAL LIFE SAVER, is 1 fluid tablet every morning, and antibiotics morn and night...in combination these prevent swelling of legs and feet, therefore reducing wear and tear blistering...
Also have motorised scooter, use it around university, and when shopping
CURRENTLY: just commenced Accutane in early Noember, so all scale bar lower legs (very stubborn stuff down there) is gone...
Very red though, and extremely peely, white flakes are so brittle, they are snapping off like the sound of a crisp...hehehe [img]http://www.ichthyosis.com/ubb/smile.gif
OMEGA FISH OILS FANTASTIC: i feel that these reduce the dryness somewhat...all I know, is that I know about it if i don't have any for a few days...
Dosage: 8 per day, (4 in morning, 4 at night)
*What have you tried that didn't help:
Lactic Acids really sting my skin especially if it misses the scaly areas
the Original Tigason (Etretinate) catastrophic says it all...
Neo-Tigason, almost as bad as Tigason,
*Any tips you have that a doctor wouldn't tell you:
yes, the salt baths, and OMEGA 3
*Tell us something fun about you and your family:
My sister and I are CAT MAD, we love all cats, and I have a house like a museum of cats. Two real ones, but ornaments galore, doona covers, pictures, cups, stamps, books, plates, toilet roll holders, handtowel holders, tapestries, toilet scrubbing brush holders, teapot...
*What is your favorite vacation spot:
I don't have one, travelling is not something that is easy for my husband and i to do...we need chaperones (sp) to travel...Only been to Queensland for 5 day, with mum and her partner 14 years ago, they pushed us around in our wheelchairs.
[This message has been edited by kacy825 (edited February 02, 2007).]
[This message has been edited by kacy825 (edited February 02, 2007).][/B][/QUOTE]