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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!"

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#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!"

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#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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#16930 - 06/05/07 04:02 PM Re: EHK & CIE Roll Call
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
I'll start with the profile then continue the cast humour...
Your name: Sarah
Affected famiy members: None - I'm all alone
Unaffected Family members: Husband parents, two brothers etc etc etc
Ages: I'll be 35 tomorrow (Yikes!)
Type of EHK: Non/palmoplantar
Describe characteristics of your skin:bulous, evenly spread, uneven gait, ridges inside joints
What do you do that works: Soriatane and lotions
What have you tried that didn't help: anything acidic in cream form
Any tips you have that a doctor wouldn't tell you: Playing at the beach - the wave action, salt water and sand combine to be a gentle, and fun, exfoliator
Tell us something fun about you and your family: At least one member of every generation, going back at least six, has immigrated to a new country
What is your favorite vacation spot: Beaches with warm, clear water for snorkeling - cruises are awesome!

OK - here is my cast story.
I broke my right wrist quite badly at the age of 12. I had a cas that went past my elbow and I had also abraded my elbow in the fall. When they took the cast off, nothing stuck and the bandage that was on my elbow cam right off. The skin was VERY thick and I didn't have ridges on the inside of my elbow, it had all grown together!! My Dad, a doctor, had to use a razor blade to cut through that area to create ridges so that I could flex my arm.
The team at the hospital had never seen anything like it but I don't remember anyone passing out. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#16931 - 06/05/07 10:41 PM Re: EHK & CIE Roll Call
Lperez520 Offline
Member

Registered: 05/10/07
Posts: 72
Loc: Brooklyn, NY, NYC
*Your name: Laurie Perez
*Affected famiy members: myself only no1 in my family is affected
*Unaffected Family members:my mom, dad, and little sister, and my 3 month old daughter
*Ages:27
*Type of EHK (KRT1,KRT10,other,don't know) I do not know much about which ehk i have i never researched my condition until recently after giving birth that my boyfriend found this site, i do plan to get a DNA to see which type I have ...
*Describe characteristics of your skin:its very noticable on my hands, feet, and knees and sometimes on my elbow, very scaling skin, which sheds all the time
*What do you do that works:right now i use over the counter lotions, like aveno, baby oil
*What have you tried that didn't help:
*Any tips you have that a doctor wouldn't tell you:i havent been to a doctor in a long time i am in the process of looking for a doctor around my area
*Tell us something fun about you and your family:I was born in Puerto Rico, and raised in New York City, i came to New York city when i was a year old my parents felt i would get better medical treatment for my skin, but honestly my skin shows alot of improvement when i am in Puerto Rican, and especially when i go to the beach, like i said earlier i am the only one affected in my family, I just recently had a baby she is 3 months now she is a handful i must say, i have a loving boyfriend ..at least i hope so lol ...but thanks to him is that i am on this site ...he found it for me i never even knew they had a site that dealt with itch
*What is your favorite vacation spot i would have to say Puerto Rico i just love going back to my place of birth ..which i will be going in about 2 weeks for a month cant wait whoo hooo

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#16932 - 06/06/07 07:52 AM Re: EHK & CIE Roll Call
libby Offline
Member

Registered: 02/25/05
Posts: 356
Loc: USA
*Your name: OLIVIA
*Affected famiy members: DAUGHTER CLAIRE AGE 11 HAS CIE
*Unaffected Family members:HUSBAND, 2 DAUGHTERS
*Ages: ME 37, HUSBAND 43, CLAIRE 11, JANE 10, CAROLINE 8
*Type of EHK (KRT1,KRT10,other,don't know) CIE
*Describe characteristics of your skin:FLAKY, DRY, SCALY
*What do you do that works:WE USE ADERMA ON CLAIRE'S SKIN AND SHE ALSO SOAKS IN DEAD SEA SALT BATHS
*What have you tried that didn't help:EUCERIN
*Any tips you have that a doctor wouldn't tell you:OUR DR. TOLD US TO GET RID OF OUR PETS! ALSO TO NOT SOAK IN THE TUB! MY DAUGHTER WAS NOT DIAGNOSED UNTIL SHE WAS 5, SO WE WERE TOLD ALL SORTS OF CRAZY THINGS. WE MUST HAVE SEEN AT LEAST 30 DERMS IN OUR AREA BEFORE WE FOUND ONE THAT KNEW WHAT THE HECK WAS WRONG!
*Tell us something fun about you and your family:HMMM...WE LOVE TO DO THINGS TOGETHER! WE HAVE A GREAT NEIGHBORHOOD AND TEND TO HOST A LOT OF FAMILY GAME NIGHTS. IN THE WINTER IT'S USUALLY BOARD GAMES AND IN THE SUMMER WE PLAY SOFTBALL ON FRIDAY NIGHTS. WE USUALLY HAVE ABOUT 30 KIDS AND 20 ADULTS! IT'S LOTS AND LOTS OF FUN! WE ARE ALSO BADMINTON CRAZED RIGHT AT THE MOMENT! CLAIRE AND I PLAY FOR BLOOD!!!!
*What is your favorite vacation spot:WE'RE NOT PICKY! WE LOVE TO CAMP, VACATION BY THE SHORE, VISIT FAMILY DOWN SOUTH, ETC.



[This message has been edited by libby (edited June 06, 2007).]

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#16933 - 01/22/08 04:46 PM Re: EHK & CIE Roll Call
kacy825 Offline
Member

Registered: 01/12/06
Posts: 89
Loc: Ellicott City, Maryland, USA
Doing the bump!!!!
_________________________
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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#16934 - 01/22/08 07:56 PM Re: EHK & CIE Roll Call
chloeslife Offline
Member

Registered: 10/27/07
Posts: 10
Loc: East Millinocket Maine
*Your name: Melissa Creehan
*Affected famiy members: My Daughter
*Unaffected Family members: Myself
*Ages: Melissa:27, Chloe:3
*Type of EHK (KRT1,KRT10,other,don't know)don't know other than it is EHK
*Describe characteristics of your skin: CHloe's skin is dark almost black on hands knees and ankles full body discoloring at times
*What do you do that works: baby oil jel- on full body and in her hair and mineral oil in her hair every other day, aquaphor and petro-carbo it is a product from Watkins in Atlanta GA a family memeber send it to me
*What have you tried that didn't help: nothing yet but still looking for ideas
*Any tips you have that a doctor wouldn't tell you: My daughter was not dignosed until she was almost 6 months old and they sent us to Boston
*Tell us something fun about you and your family: My little girls best times together are in the bath tub we spent a lot of time there.... but we are togther all the time it is just us
*What is your favorite vacation spot: we have never been on a vacation we have not had the money to go on vaction and i work a alot and she is at my parents alot,they are her babysitters

I am very lonely as a single parent that is just looking for people to talk to that are willing to talk to me adn make me more understanding of what i ahve to look forward to in the future. I live in Maine and there are only a few people in the state with the skin disorder and we are not able to see the other child that has Palmerplanter EHK he lives about 3 hours south of us and we have only met him once. but that is what there is about Me and Chloe. THank you for the time that you have spent reading this. if there is anyone that would like to talk to me my home number is 207-746-5659
_________________________
melissa creehan

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#16935 - 01/25/08 06:22 PM Re: EHK & CIE Roll Call
Martika Offline
Member

Registered: 04/15/05
Posts: 78
Loc: Southern California
Your name:
*Me, My mom, and grandmother. We don't yet know if my baby will have it. Doing amnio @ 16 weeks.
*My 3 brothers James, Jon, Mike.
*Ages:James= 19, Jon 17, Mike 15
*Type of EHK Not sure, genetic dr. ordered my results from Vanderbilt where I was diagnosed at birth.
*my skin is Dry, but in pretty good condition. only BIG problem areas are Neck, bends of arms and legs, and feet.
*I take a long bath to soak, then exfoliate, first w/a sponge, then with a scouring pad(the green ones) It hurts like hell but works.
*Bleach water didn't work for the odor, and not using lotions didn't work for my skin either
*Any tips you have that a doctor wouldn't tell you: hmmm. try different skin treatments til you find one that wont work.
*Tell us something fun about you and your family: Well, my hubby and I are expecting baby #1. We want a girl! but my little bro. says we MUST have a boy.
*What is your favorite vacation spot:
hmmmmm. never really "vacationed", Sad I know.

Cindie
_________________________
Mommy to TJ (EHK, T21, 8/14. VSD/ASD repair 11/4) Wife to WONDERFUL Husband and daddy Carlos, and Baby Mason Born 12/9/09

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#16936 - 05/07/08 09:49 AM Re: EHK & CIE Roll Call
fiona89 Offline
Junior Member

Registered: 05/07/08
Posts: 3
Loc: Kuala Lumpur,Malaysia.
Hi i'm Fiona ages 19

I'm a lonely angel so no one one my family affect.

My doc told me i'm EHK aka Bullous CIE.

My whole body on and off will grow bullous once the bullous is off will form a dark colour skin. palm,sole,elbow and knee have extra thick scaly skin.

I just apply lotion to make my skin stay moisture. Doc prescribe cream but not all work.

Well i don't wanna be a burden to my family so at ages 16 i already help my family business. We work together, go home together thats i count fun cause we're close!

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#22695 - 09/21/08 10:22 PM Re: EHK & CIE Roll Call [Re: fiona89]
kacy825 Offline
Member

Registered: 01/12/06
Posts: 89
Loc: Ellicott City, Maryland, USA
Bumping the post...
_________________________
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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#22836 - 10/14/08 08:52 AM Re: EHK & CIE Roll Call [Re: kacy825]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Posting to add #4 to the roll.

I now have Nathan, Elliot and Oliver, all affected, as well as my husband. Oliver appears very mild, but he is definitely affected.
_________________________
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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#22843 - 10/14/08 07:04 PM Re: EHK & CIE Roll Call [Re: Hearsay]
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Jennifer
Many congragulations to you and Brian on the birth of your son Oliver. Big hugs for Nathan, Elliott, and Miranda from Uncle Les.
Take care,
Les
_________________________
Les Avakian

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#23063 - 10/30/08 01:50 AM Re: EHK & CIE Roll Call [Re: kacy825]
may3332 Offline
Member

Registered: 08/01/02
Posts: 15
Loc: tacoma, WA
-My name is Melissa Yang
-My daughter Miah is affected with a Mosaic pattern
-My two boys and Miah's dad is unaffected
-I am 31, Miah is 6, Kue is 9, and Qian is 10
-Miah has a KRT1 mutation and I think she is affected by more than one area
-Miah has pigmnet changes and rough thick scaly skin that flakes and itches. it is painful when her scales thinken
-We are still, 6 years later trying to find something to work
-We have family fun night on Friday's
-We love the beach

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#24458 - 05/19/09 10:28 AM Re: EHK & CIE Roll Call [Re: may3332]
Lauren Offline
Member

Registered: 10/14/08
Posts: 47
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:

*my name is Ji
*our 3rd daughter(Lauren) is the only one affected(11 month old)
*me and my husband Chris, Rachel(5yr old),Alex(3yr old),no evidence from both family.
*not too sure what kind she has but her plam and sole are normal.
*she is going thourgh peeling on wrist,legs,diaper area.pretty dry skin all over her body except her back,plam,sole,upper chest area,face(mildly affected on face)-her areas of thickest skin are on all her joints area neck,wrist,under arms,inner thighs/,knees,inner elbow
*long bath with baking soda&bath bead and then scrubs manually (I only can scrubs on her wrist and inside of her elbow,ankle by this time she is crying so hard and I can't do it anymore.....when she was more baby she fell to sleep in the bath so I was able to remove the thick skin but she is almost 1 year old now she doesn't sleep or stay still....my baby is growing so fast^^),after bath apply aveeno lotion all over her body,lactic acid on thick area only follow by aquaphor.
*sicne our kids are so young we can't go any far......but we love to go to Wisconsin dells water park twice a year one in summer, one in winter time both seasons are fun! also we just moved to new home which has huge back yard we trying to enjoy as much as we can.......^^
our family is very involved with our church. my husband is sunday school teacher. Sunday is one of the day that we always wating for.......




Edited by Lauren (05/19/09 10:30 AM)

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#26129 - 03/31/10 11:23 PM Re: EHK & CIE Roll Call [Re: Lauren]
GenevievesMama Offline
New member

Registered: 03/31/10
Posts: 1
Loc: Minnesota
Your name: Anna Schmaedeka
*Affected famiy members: My daughter, Genevieve Mae (born 2.8.2009)
*Unaffected Family members: me and my boyfriend.
*Ages: I am 24. my boyfriend is 23. and Genevieve is almost 14 months
*Type of EHK (KRT1,KRT10,other,don't know) KRT1
*Describe characteristics of your skin: build up on her elbows, wrists and armpits. knees have minimal build up. thick hard soles on her feet and palms of her hands. very flakey when dry.
*What do you do that works: we apply Cetaphil Moisturizing Cream once a day to her skin. Bathe her once a day. After she has soaked for a bit in the tub, I lightly rub her skin with a wash cloth to get loose skin off and exfoliate the build up a little. On her scalp we rotate between Nizoral shampoo and Tsal Shampoo.
*What have you tried that didn't help: Aquaphor. Vaseline. Vaseline gauze.
*Any tips you have that a doctor wouldn't tell you: ....
*Tell us something fun about you and your family: We are very much into hot rod cars. Our summers are filled with car shows.
*What is your favorite vacation spot: Northern Minnesota/upper Northwestern Wisconsin (Cable, WI)


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#26263 - 04/22/10 05:53 PM Re: EHK & CIE Roll Call [Re: kacy825]
Rupert Offline
New member

Registered: 04/18/10
Posts: 4
Loc: Dublin
*Your name:
Rupert

*Affected family members:
Just me

*Unaffected Family members:
Everyone else

*Ages:
I'm 31

*Type of EHK (KRT1,KRT10,other,don't know)
NPS-1 (no palm/sole scales, hystrix scaling), which means KRT10, probably

*Describe characteristics of your skin:
Palms and soles unaffected, occasional blistering, brown hystrix scaling if untreated (ridged on inner elbow/back of knee/wrists etc, cobblestone on outer elbow/knees) but much of it scrubs off or can be cut off, given time and attention.

*What do you do that works:
Bathe with oilatum or similar, and scrub. Apply aqueous cream/E45.

*What have you tried that didn't help:
Well, these all helped somewhat, but are too much hassle to bother with: acitretin (downsides: dry/fragile skin, blood tests, worry about worse side-effects), Retin-A (dry/fragile skin), urea cream (stings).

*Any tips you have that a doctor wouldn't tell you:
Nope.

*Tell us something fun about you and your family:
We're all great.

*What is your favorite vacation spot:
Somewhere new.

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#28278 - 02/27/12 03:20 PM Re: EHK & CIE Roll Call [Re: kacy825]
Anonymous
Unregistered


Your name: Glenn

Affected Family Members: Me

Unaffected Family Members: Everyone Else

Age: 28

Type of EHK: Im not sure but im covered head to toe, palms, and soles

Characteristics of skin: Occasional blistering, cobblestone on outside of elbows and knees. Brown scaling on inside of elbows and knees and in arm pit area.

What do you do that works: I take an hour to an hour and a half long bath most every night. I use a cup of bleach for every gallon of water in the bath. I scrub with a basic pumice stone, and apply aquaphor when i get out

What have you tried that didnt help: I was on accutane but it ultimately became more hassle than it was worth

Any tips you have that a doctor wouldnt tell you:
the bleach in the bath

What is your favorite vacation spot:
anywhere not hot

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#28764 - 01/18/13 05:36 AM Re: EHK & CIE Roll Call [Re: kacy825]
Alexasmom Offline
Member

Registered: 08/05/12
Posts: 9
Loc: Mississauga, Ontario, Canada
It's been a long time since anyone has posted here, but I am hoping to make some connections.

*Your name: Dawn
*Affected famiy members: My daughter, Alexa (7 months old)
*Unaffected Family members: Myself, my husband, Ron and my daughter, Nicole (2 years old)
*Type of EHK (KRT1,KRT10,other,don't know). K10 genetic mutation
*Describe characteristics of your skin: Alexa has a number of blisters on any day. Her skin heals very quickly. She is more affected from her neck down, not much on her face and head. Alexa is not affected on her palms and soles of her feet.
*What do you do that works: Trixera works well on her head and face, Aquaphor on the rest of her body, cool mist humidifier set to 60%.
*What have you tried that didn't help: Oilatum
*Any tips you have that a doctor wouldn't tell you: I wish!!! We're still new at this.
*Tell us something fun about you and your family: We are dreaming of a family vacation on a Disney Cruise
*What is your favorite vacation spot: So far, The Freedom of the Seas Cruise Ship.

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#30112 - 10/26/15 11:19 AM Re: EHK & CIE Roll Call [Re: kacy825]
Tkaufman Offline
Member

Registered: 02/10/04
Posts: 11
Loc: Raritan, NJ, USA
Where is everyone?

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