Rare skin disease afflicts Wajir family - Daily Nation

Wajir family seeks help to treat rare skin condition

Thursday July 26 2018

Ms Billahi Adan ichthyosis

Ms Billahi Adan with three of her children children were born with the rare skin condition known as ichthyosis. She is appealing for help to have them treated. PHOTO | BRUHAN MAKONG | NATION MEDIA GROUP 

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A family in Halane, Wajir County is seeking financial assistance in order to get specialised treatment for a rare skin disease that has so far affected four children.

In an interview with the Nation, Ms Billahi Adan, a mother of six, said that all the four children were born with the condition.

The affected children are aged six, four and two years while the last born is 10 months old.

“I gave birth to my first two children in a normal condition but the last four were all born with the condition,” she said.


The condition referred to as ichthyosis turns the victim’s skin dry and scaly and is sometimes painful.

According to the Foundation of Ichthyosis and Related Skin Types, ichthyosis is a family of genetic skin disorders characterised by dry, scaling skin that may be thickened or very thin.

Every year, more than 16,000 babies are born with some form of ichthyosis.

A recent study has determined that approximately 300 babies are born with a moderate to severe form of ichthyosis each year.

Ichthyosis affects people of all ages, races and gender.


One of Ms Billahi Adan's children affected by ichthyosis, a genetic skin disorders characterised by dry, scaling skin. PHOTO | BRUHAN MAKONG | NATION MEDIA GROUP


The disease usually presents itself at birth or within the first year and continues to affect the patient throughout their lifetime.

It’s not the first time such a case is being reported in Wajir County.

Many other children are said to be suffering from the disease that only came to the limelight in 2016 when Kenyans carried out a social media campaign via Twitter under the hash tag #SaveWajirKids.

During the campaign, Kenyans urged the government to take immediate action to save the children from the effects of the condition.

Ms Adan said that her earlier attempts to seek medical help have been unsuccessful, adding that every time she goes to hospital, she is only given a lotion with no explanation whether the condition is treatable or not.

“Every time I go to hospital, I tell myself that maybe one day my children will be ok,” she said.


She added that for years now, she has been applying the lotion on her children with no significant change and that sometimes they end up suffering from continuous itches.

She said it is painful for her to see her children suffer.

She further said that due to her inability to afford specialised treatment she has only been going to the Wajir County Referral Hospital for close to seven years.

She further said that no one in her extended family has ever suffered from the condition.


She said that recently, her youngest child who is still breastfeeding experienced some itching in his eyes and upon rushing him to hospital, she was informed that the infection had gotten into the eyes and thus he needed an operation.

“I was referred to Garissa hospital or hospitals in Nairobi by the doctors in Wajir but I had to return home because I cannot afford the costs of the operation,” she added.

Ms Adan added that she is afraid the infection could blind her child if he does not get immediate medical attention.

She appealed to well-wishers and the county government to come to her rescue and help her treat her children.

“I call upon Kenyans of goodwill and the Wajir County government to help me raise enough money that will enable me seek specialised treatment for my children,” she said.