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#23063 - 10/30/08 02:50 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 11:28 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 11:30 AM)

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#26129 - 04/01/10 12:23 AM Re: EHK & CIE Roll Call [Re: Lauren]
GenevievesMama Offline
New member

Registered: 04/01/10
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 06:53 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 04:20 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 06:36 AM Re: EHK & CIE Roll Call [Re: kacy825]
Alexasmom Offline
Member

Registered: 08/06/12
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 12:19 PM 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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