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Epidermolytic ichthyosis: The ‘scaly’ skin disorder

By Moses Nyamori | August 12th 2015 at 00:00:00 GMT +0300

Esther Kimani’s skin is thick, dry and sheds faster than normal which gives it a scaly-like appearance.

And although her skin occasionally causes her discomfort, her greatest pain comes from the stigma she is forced to endure due to the rare skin condition.

The 31-year-old suffers from a genetic skin condition, Epidermolytic ichthyosis, which makes her skin shed faster than normal resulting in thick scale-like skin underneath.

“Most people’s reaction to me the first time we meet is that of horror and many do not want to get near me,” she says.

Despite this constant rejection, Ms Kimani has refused to let the condition dampen her life.

She is at the fore-front creating awareness about the rare skin disease which affects one out of 300,000 people, according to Foundation for Ichthyosis and Related Skin Types (FIRST) an organisation that seeks cures for people affected by Ichthyosis and related skin diseases.

Kimani is currently First’s representative in Africa and she says the organisation has helped her better understand what ails her.

“I now have facts about this condition and want to share the same with other victims. Awareness creation helps people with the condition connect and goes a long way in fighting isolation and stigmatisation,” she says.

The strong-willed woman has also resolved to educate the masses about the condition and goes to schools and public gatherings to openly talk about her illness.

“I would like to share with them about my condition. I want them to know they should not be afraid to relate with others like me because this disease is not contagious,” she says.

In May this year when the world was marking Ichthyosis Awareness Month, Kimani reached out to the discriminating society through social media and other platforms to talk and share about her rare condition and challenges she has had to face due to the skin disease.

The woman who developed the condition as a toddler says it was a harrowing experience for her and the family since they could not understand her disease.

“It was very painful as blisters would appear on my whole body and my condition really traumatised my parents,” she recalls.

 After visiting numerous doctors and trying herbal concoctions, a good Samaritan sponsored her to Scotland in 1996 for medical care.

“I met a dermatologist who carried out a biopsy on my arm. He told me I was suffering from a genetic condition; and there was no cure,” she says.

Although she expected to get a cure, knowing her condition and what to do about it has helped her.

“Today I no longer itch or have blisters,” she said.

She uses lotion to hydrate her skin. “I also bath more,” discloses Kimani.

Epidermolytic ichthyosis Foundation for Ichthyosis and Related Skin Types (FIRST) Esther Kimani
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