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#16930 - 06/05/07 05:02 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 11:41 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 08:52 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 05:46 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 08:56 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 07:22 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 10:49 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 11:22 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 09:52 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 08:04 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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