Comments on: Painful Condition Makes Sisters Grow Excessive Skin

By: cinsel saglik

cinsel saglik — Mon, 24 Mar 2008 13:41:25 +0000

thanks for this.it’s a nice story.

By: Joanne Brunetti

Joanne Brunetti — Thu, 20 Mar 2008 04:35:52 +0000

This is not “news”. This skin disorder is not as rare as they make it sound. My daughter has Lamellar Ichthyosis, directly related to Harlequin Ichthyosis. While she was born a collodian baby as these girls were; today she is a beautiful 26 year old woman. She grew up always being told how beautiful she is and we never told her she could not do anything. People stare and comment, their problem. She is studying to be a physical therapist, plays all kinds of sports and is currently the captain of her women’s roller derby team as well as the MVP and high scorer for the season. While there is no cure for these disorders, she sees a dermatologist and is treated with medication that has helped her tremendously. These parents need to get there girls to a good doctor and allow them to live a normal life. It’s not as bad as they have made it out to be.

By: Brad

Brad — Wed, 19 Mar 2008 14:25:58 +0000

Heartbreaking.

By: shilan

shilan — Wed, 19 Mar 2008 14:20:21 +0000

God please bless these girls, and bless their family. I hope things get better for them, it’s so devastating hearing about incurable diseases.

By: lisa

lisa — Wed, 19 Mar 2008 13:40:12 +0000

I saw a documentary a few months ago on this skin condition and my heart went out to the children affected and their families. The girls are so courageous in spite of what they go through everyday – and their parents are so supportive and loving.

By: Mike

Mike — Wed, 19 Mar 2008 04:40:38 +0000

I saw this documentary many years ago… which begs the question, WHY is it on the Fox News page today? Did they have a blank space they needed to fill or something?

By: Sandra

Sandra — Wed, 19 Mar 2008 03:33:11 +0000

I found this video on You Tube of a doctor explaining this and how he treated a baby. Here’s the link:

By: JD Vehorn

JD Vehorn — Wed, 19 Mar 2008 03:21:49 +0000

May God heal & bless these darling little girls. They are so brave. Love to them and their families.

By: Ken

Ken — Wed, 19 Mar 2008 00:46:22 +0000

There was a documentary in the U.S. last year telling the story of a young man now in high school who has this condition. His pediatrition perscribed vitamin A for him when he was an infant, which slowed down the growth of skin cells. Since then he has been receiving daily doses of vitamin A, which allows him to lead a relatively normal life.

By: gina

gina — Wed, 19 Mar 2008 00:00:07 +0000

This happens here in the US too. My son has another form of Icthyosis, Not as severe as this. Its called X Linked. Only the men on my mothers side of the family have it. This type here is the most severe.