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#28832 - 03/01/13 03:08 PM Need some help! New baby with EHK..
TglbJarbMomma Offline
New member

Registered: 03/01/13
Posts: 2
Loc: Kern County, California, USA
Hi, my name is Annaliese. I'm new to the site and the mother to a four year old and a two month old. My daughter, Jossilynn ( two months) was diagnosed with EHK bullous form after two weeks in the hospital. She also has palmoplantar keratoderma, so it effects her hands and feet. I'm wondering if there's anyone else out there that has this condition or children with this condition. I'm having a hard time finding any information on a personal level. And, anyone who knows about this condition knows its a lot to cope with. I can also be reached by email the_beckhams08@ yahoo.com. Thanks for reading! Any advice would be appreciated since I honestly feel like I'm just guessing most days even after speaking with 2 dermatologists.

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#28835 - 03/02/13 11:52 AM Re: Need some help! New baby with EHK.. [Re: TglbJarbMomma]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Hi! Congratulations on your little girl!

We have a condition similar to PPK EHK. I have somewhere to be most of today but I will email you later tonight when I get home. In the meantime, come find me on Facebook and I can put you in contact with a mom in your area who has a 1yo with EHK.

Also, contact firstskinfoundation.org. This summer they have a one day regional conference planned in San Jose that you would probably get a lot out of attending.
_________________________
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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#28837 - 03/02/13 08:52 PM Re: Need some help! New baby with EHK.. [Re: Hearsay]
TglbJarbMomma Offline
New member

Registered: 03/01/13
Posts: 2
Loc: Kern County, California, USA
Thank you sooooo much!! I have posted on numerous sites and you are the first to respond! I contacted the FIRST lady in charge of connecting you with other families and have not heard back. Thanks for the info about the conference, it's a few hour trip but doable since we travel 6 hours to San Francisco to see her dermatologists. Thanks again, I look forward to your email. smile

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#28838 - 03/03/13 03:14 AM Re: Need some help! New baby with EHK.. [Re: TglbJarbMomma]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
If you contacted them on Friday, they aren't in the office, so I'd expect to hear back next week.

Are you seeing Erin Mathes? She's awesome.

Catch me over on Facebook, too. I can hook you up directly. Here's her blog. (She's in LA, I think) jradandjess.blogspot.com
_________________________
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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#28977 - 07/30/13 10:58 AM Re: Need some help! New baby with EHK.. [Re: TglbJarbMomma]
12/01/13C Offline
New member

Registered: 07/30/13
Posts: 2
Loc: Cairns, Queensland, Australia
Hi, I'm new on here too, my 6 month old has BIE but hands n feet are not affected.
We are also guessing all the time as the conditions keep changing just as we gain some understanding.
The blisters are what we have trouble managing (he seems to be in extreme pain?)
It is to unknown here in Australia so we can't get a lot of day to day care advice.
The thickened skin doesn't budge with anything and send to be painful to even rub in the bath.
Would love for some advice our share stories if solar situations too.

_________________________
12/01/13C

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#28982 - 07/31/13 03:51 AM Re: Need some help! New baby with EHK.. [Re: TglbJarbMomma]
Kanga Offline
Member

Registered: 12/01/11
Posts: 11
Loc: Queensland, Australia
G"day there,

There are number of people in Australia with ichthyosis and quite a few knowledgeable doctors. Especially in Brisbane (where I am from), Sydney and Melbourne. I'd be more than happy to connect you if you wish to contact me at jeffgridley@yahoo.com.au


Edited by Kanga (07/31/13 03:53 AM)
_________________________
Kanga
(Jeffrey Gridley - Lamellar Ichthyosis)

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