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#16920 - 02/02/07 10:12 AM EHK & CIE Roll Call
kacy825 Offline
Member

Registered: 01/12/06
Posts: 89
Loc: Ellicott City, Maryland, USA
Ok, so I am a poser from the Mom and Dad group, but it is a great way to get to know each other better. So if you would like, please post the following about you or your family members.

*Your name:
*Affected famiy members:
*Unaffected Family members:
*Ages:
*Type of EHK (KRT1,KRT10,other,don't know)
*Describe characteristics of your skin:
*What do you do that works:
*What have you tried that didn't help:
*Any tips you have that a doctor wouldn't tell you:
*Tell us something fun about you and your family:
*What is your favorite vacation spot:

[This message has been edited by kacy825 (edited February 02, 2007).]

[This message has been edited by kacy825 (edited February 02, 2007).]
_________________________
Kacy - 41
Happily married mom of 3 sons.(unaffected)
EHK-KRT1 palmorplantor, spontaneous mutation
Younger brother also affected.

" I have EHK, it doesn't have me!"

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#16921 - 02/02/07 10:42 AM Re: EHK & CIE Roll Call
kacy825 Offline
Member

Registered: 01/12/06
Posts: 89
Loc: Ellicott City, Maryland, USA
* I am Kacy

* My brother and I are both affected

* My parents and three children are unaffected, there is no other evidence of it in my family.

* I am 39 (shhh) my brother is 31.

* We are described as KRT1 palmorplantor, spontaneous mutation.

* My skin is overall reddish in color, I have hyper-prolifritive skin growth(heals quickly), my areas of thickest skin are on all my joints and soles of hands and feet, I had difficulty sweating as a child but it is no longer a problem, and I have contractures and constrictive bands on my hands.

* The thing that still works the best is long baths with manual exfoliation. I have little shortcuts though that make it quicker. I also feel changing routinely between the lotions that work for me makes them more effective.

*I recently put Nuetrogena hand cream on my whole body and it was like I put nothing on.
I tried Tazorac and it also did nothing.

* Tips a doctor wouldn't tell you, I use those green scouring pads, the platic mesh looking kind, on my skin. I throw them away after a few uses.
I use a Dremel drill to remove callusing from the palms of my hands and bottoms of my feet.
I add glycerin to some lotions in the winter.
I love shea butter.
I use tea tree shampoo on my scalp, and go once a month for a scrubing shampoo at my salon. This keeps my scalp looking great.

* My family is alot of fun. I have three boys and they are a handful. They are very involved in EVERY sport. My husband is a chef, he has a full time job during the week and caters on some weekends. My whole family is very involved with our church. We started a church plant from our home church. I teach 35-50 children every week, do drama and sometimes dance routines. My husband is the worship leader and the boys are on the dance team. We do a program called Kids Stuff that teaches virtues and values though high energy music, dance, drama and practical life lessons. We love it.

* We love to take vacations. My favorite places are anywhere warm with crystal blue water.( St Thomas, Grand Cayman) We love to take cruises, but I think my kids like Disney the most.

[This message has been edited by kacy825 (edited February 02, 2007).]
_________________________
Kacy - 41
Happily married mom of 3 sons.(unaffected)
EHK-KRT1 palmorplantor, spontaneous mutation
Younger brother also affected.

" I have EHK, it doesn't have me!"

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#16922 - 02/02/07 02:04 PM Re: EHK & CIE Roll Call
kacy825 Offline
Member

Registered: 01/12/06
Posts: 89
Loc: Ellicott City, Maryland, USA
I am always looking for them. A while back Target had a bundle of 15 in the dollar area. I bought a ton. I like them cause the catch the skin, and they don't hurt me.
_________________________
Kacy - 41
Happily married mom of 3 sons.(unaffected)
EHK-KRT1 palmorplantor, spontaneous mutation
Younger brother also affected.

" I have EHK, it doesn't have me!"

Top
#16923 - 02/02/07 05:14 PM Re: EHK & CIE Roll Call
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
*Jennifer
*My husband, Brian and our two birth children, Nathan and Elliot

*Brian's parents, nobody on my side, our adopted daughter Miranda.

*Brian and I are 31. Nathan is 4, Miranda is almost 3 and Elliot is 1.

*We have something that resembles EHK on first glance, but it doesn't blister and the genetics are unknown. My husband started getting white spots all over him when he was about 8-10. The boys don't have any yet.

* Thick, fairly sturdy when dry, but extremely fragile when wet. The hands and feet grow fast and crack when you put pressure on them. The flexible surfaces are all ridged. When you look very closely at the skin, it is formed into tiny, perfect little square sections that are more like the plate scale on an LI person, but without the dirty appearance. It doesn't flake off, either.

*Lots of scrubbing. St. Ives Apricot scrub, 40% salicylic acid in cheap cream base as a body wash in the shower, dandruff shampoo, and filing the hands and feet every few days with either 100 grit salon nail files or with a power hand sander (Dremel). Tazorac is effective behind the knees and in the armpits, but it doesn't do much for the ridged areas and does nothing at all on the thick hands and feet.

*Most acid creams, like lac-hydrin and the AHA creams, do nothing for us. Pumice stones are too soft. Salt baths just make us itch.

* Bend a paperclip into a loop and use it to clean out the ears. Only for a child over 10, though.

* I was a physiology teacher until Elliot was born. Brian is an attorney. We are both musicians.

ETA: Oliver joined the family in September, 2008. He is also affected.

------------------
Reticular Ichthyosiform Erythroderma with white spots.
Husband, Nathan - 4, Elliot - 1, all affected.


Edited by Hearsay (04/29/09 04:39 PM)
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#16924 - 02/02/07 08:27 PM Re: EHK & CIE Roll Call
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
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[/img]

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]

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#16925 - 02/03/07 10:28 PM Re: EHK & CIE Roll Call
luckelizard Offline
Member

Registered: 02/26/03
Posts: 190
Loc: Corpus Christi, TX, USA
Hey Kacy.. really been trying to reach you!

*Crystal Rose Tumlinson

* me and my biological mother are the only one's affected

* i have two beautiful children both have normally beautiful skin

* what works for me... ummm not sure at the moment.. still just kinda letting it do its own thing.. have loads of scales but not near the pain i was in when i try things..

* i have ehk (BCIE) not sure on all the technical stuff.

forgetting something here...lol

* i love going to conferences where i can feel like i belong and in a place where ppldon't judge me. my son tells me all the time he wants to move into the hotel..lol so i guess that is where we would like to vacation most.. at the conferences.. don't really have money for anything else...

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#16926 - 03/08/07 09:40 PM Re: EHK & CIE Roll Call
dslacker Offline
Member

Registered: 08/26/00
Posts: 61
Loc: Copenhagen - Denmark - Europe
OK - Why not - been awhile since I postede here so :-)


*Your name: Niels

*Affected famiy members: Just me

*Unaffected Family members: Parents

*Ages: Im 39

*Type of EHK (KRT1,KRT10,other,don't know)
Havent got a DNA test, but it is diagnosed as "standard EHK aka BCIE..." with palmoplantar

*Describe characteristics of your skin:
I think I'm pretty close to Pauline's description, which she went so much in detail about, that im not gonna write it all again ;-) - I dont get so many blisters though, only when having been exposed to wrong presure such as walks over a mile or similar activities :-)
Im pretty bald on top but must males in my family are so its not EHK :-)

*What do you do that works:
I use a Fatty creme called Locoobase (no water content) - for thicker areas I use a variation of the same but with 5-10% lactic acid and 20 % propylene glycol.
For cracked areas or blisters I use a Vaselinebased fatty creme with zinc-oxide as the antibiotic ingredient (pretty standard baby creme as far as I know)
In the summertime i find that saltwater swimming is ok. Havent got at bathtub so saltwater soaking is not an option :-)
Besides I dont like bathing every day, if one isnt REALLY active in the lotion and exfoliating department then I feel dry all day... - I prefer not spending my life in the bathroom - I that makes me look a little worse than I could so be it...

*What have you tried that didn't help:
Tigason (the original)

*Any tips you have that a doctor wouldn't tell you:
Its more important to have a life than taking care of a disease - keep a balance in all things and dont be a fanatic about anything

*Tell us something fun about you and your family:
EHK related I now find it pretty funny that the attending nurse passed out after we cut the cast on my leg after I broke it skiing when I was 12 - after 6 weeks without air you can probably guess...
Other fun - hmmm - Remote controlled aeroplanes is much more fun nowadays with cheaper lightweight batteries and more powerfull engines - highly recommended hobby :-)

*What is your favorite vacation spot:
Anywhere with a decent beach or good fishing opportunities
Tolerant surroundings is a plus :-)

------------------
The Danish Slacker
-------------------------
dslacker@trustme.dk
"Have you got the will to be weird"
----------------------
_________________________
The Danish Slacker
-------------------------
dslacker@trustme.dk
"Have you got the will to be weird"
----------------------

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#16927 - 03/08/07 10:31 PM Re: EHK & CIE Roll Call
kacy825 Offline
Member

Registered: 01/12/06
Posts: 89
Loc: Ellicott City, Maryland, USA
Hi Neils,
Thanks so much for posting. I agree with you, we have a skin condition it shouldn't have us. I had to laugh about your cast experience, it brought back memories of a cast on my arm. When is your birthday? We are the same age. Kacy
_________________________
Kacy - 41
Happily married mom of 3 sons.(unaffected)
EHK-KRT1 palmorplantor, spontaneous mutation
Younger brother also affected.

" I have EHK, it doesn't have me!"

Top
#16928 - 03/09/07 08:22 AM Re: EHK & CIE Roll Call
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Oh Dear, Hey Niels, how ya going?
hehehe, re: my full description, at least it wasn't visual if you know what i mean? [img]http://www.ichthyosis.com/ubb/smile.gif[/img] hehehe
Umm, and yeah like Kacy, I got a real laugh out of the cast thing...what a scream...

I always wondered if we could handle a cast...does the skin get infected, or blister under there from the heat?

does it get itchy like everyone else?
AND what did the skin look like under there...hehehe...did the scale stick to the inside of the plaster when it came off?

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#16929 - 03/09/07 10:26 AM Re: EHK & CIE Roll Call
kacy825 Offline
Member

Registered: 01/12/06
Posts: 89
Loc: Ellicott City, Maryland, USA
When they took my last cast off, the skin was way over grown, smelly, and hard to move. It was ugly!!!! lol!!!
_________________________
Kacy - 41
Happily married mom of 3 sons.(unaffected)
EHK-KRT1 palmorplantor, spontaneous mutation
Younger brother also affected.

" I have EHK, it doesn't have me!"

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