Ichthyosis in developing countries: the stigma experienced in Africa.

 

In July I was alerted to some children in Wajir, Kenya who are suffering terribly from Ichthyosis. I rarely use the term 'suffering' but these children really are. My heart breaks for them.

The children haven't received adequate medical treatment and are hidden from their community. I've been told that children with disabilities are killed or left to suffer. Their families and communities believe it's witchcraft that caused Ichthyosis, and bear great shame in having a child that looks different.

I was told differing information about the children – I don’t know how many children are affected by Ichthyosis, and when trying to get in touch with one boy’s immediate family (Baby Abashir, below), two men initially claimed to be his uncle, and later told me they are just part of the campaign to save these children.

An aid worker contacted me on Twitter and then by email. She said the children have a dermatologist and creams. But she couldn’t give me exact information about how I could help – where to send creams to, how to get information about care plans and emotional support to them.

And the Foundation for Skin and Related Types (FIRST) tweeted at this aid worker offering only a teleconference between the Kenyan dermatologist and FIRST, but the infrastructure in the town of Wajir doesn’t allow this.

There has been a social media campaign (#savewajirkids) which has raised a lot of awareness that these kids exist and need help. But sadly, a lot of it is clicktivism - sharing tweets and expressing sadness, without offering tangible help.

I worry about the speculation created in the #savewajirkids social media hashtag. A lot of misinformation has been spread - including how Ichthyosis might have been caused by nuclear waste. And there are tweets expressing horror about the image of these kids. I don't agree with these kids' photos being used for speculation if there are no facts to back them up. Yes, awareness needs to be raised, but the kids need their dignity, respect and tangible help. A tweet will raise awareness, but won't help these kids. A treatment plan and ongoing support will.

And I didn't see many people in the Ichthyosis community talk about these kids. (I wanted to help them like I helped Baby Julius - but I could not do it alone.)

The same week I was alerted to the Wajir children via the hashtag, I was contacted by an ABC journalist based in Kenya, who is committed to telling the kids' story sensitively - to educate the community and to reduce stigma. He wanted to cover this story, but I am not sure whether it’s been published yet. In a lengthy email, I told him about my treatment and the support I receive, and what might help these children. I only hope he has passed the information onto the children’s families and dermatologist, even if the article has not been written.

So with the futility of contacting the aid worker, the men claiming to be family, a brief response from FIRST, and the cessation of the journalist's emails, I don’t know how else to help these children, which is why I am writing this blog post.

I felt a terrible sense of privilege explaining my situation to the journalist, because I know just how little these children have - in terms of medical aid and understanding. And I’m reminded of the life-lottery – I believe my life would have been a lot different if I was born elsewhere. There would be a different healthcare access, and also different attitudes towards appearance diversity and disability.

In reading about the Wajir kids and answering the journalist’s questions, I've realised how lucky I have it. How lucky so many of us with Ichthyosis who are born or adopted into the first world are. While I have access to medical treatments such as ointments and antibiotics, sadly these children do not. Their skin has deteriorated so much. And I've never faced this type of stigma and discrimination faced in Africa. (I know others in Asia who have experienced similar stigma.)

I don't know whether my advice to the journalist was useful because there's still so much more to be done in terms of rigorous treatment to get the kids' skin to a manageable state before commencing routine ongoing treatment, and of course, encouraging acceptance and inclusion in these communities. Additionally, good health is helped along with good nutrition, and families might simply not have enough money and access to nutritious food to ensure their children with Ichthyosis are eating well. I know how painful the condition is and I can't imagine the pain these kids ensure when it's gone untreated for so long. I am very sad for them.

In 2014, Jennifer See wrote about Ichthyosis in Ghana on her blog Confetti Skin. Jennifer wrote:

"The youngest child is Amotalé. Michelle told me that while Amotalé is 10 years old, she is only the size of a healthy 4-year-old. Her name means, "Has it gotten to this?

She has scurvy from vitamin C deficiency and walks with a stick because her legs won’t straighten around the thick scales on her joints. She has severe malnutrition and her belly is distended. Her poor head is so thick with scale that it is like a cap. Michelle told me that two days ago, when she gave Amotalé a bath and removed some of the scale from her head, she saw the skin underneath was leaking pus and was infected. A separate Facebook post from the same day even says there were maggots underneath her scalp. Michelle said that Amotalé hated the bath, but once she was done with lotions, the little girl started dancing."

There are others living with Ichthyosis in similar conditions across the world (Nepal and India). The stigma and lack of knowledge about the condition and access to treatment is very similar to what the children in Africa experience.

I have an online friend with Ichthyosis who lives in Kenya. Esther, in her 30s, wrote to me outlining some of the experiences she has had, as well as some advice. She has just got married! I wanted to get a sense of what it’s like to live with such a rare, stigmatising condition there, and she has given me so much insight. Esther has met with Baby Abashir and his family to provide them with advice and support. (I have edited her words a little for punctuation and grammar.)

 

"I have lived with the EHK Ichthyosis all my life. It was very difficult for doctors here to understand it know what was wrong with my skin so it was such a hard time for my parents. In those young years nobody gave them the right diagnosis so I was grouped with all others who have the common skin diseases. I saw my dermatologists with no success.

I am happy with my skin, it had improved so much I no longer itch or get blisters which were so bad in my years. I am now on creams that a doctor who is good on alternative medicines. I also exfoliate my skin which makes it smooth. I am also on whole grain diets which has helped my skin.

What baby Abashir us going through with his family is what we went [through too]. I have faced isolation, stigma and discrimination in different aspects of my life since not many know or understand what Ichthyosis is. And doctors too, I have faced difficulties with them too when I try to explain to them.

I do work am self employed in informal sector - I sell handbags which I love. That's how I manage. I can say that am fortunate my family loves and accepts me, so I am confident.

But I am sad to say kids with Ichthyosis are hidden, not educated and even are abandoned by their families. The culture here contributes to this because they believe it's witchcraft.

So children and adults in the most remote parts of Kenya continue to suffer in silence.

My dream and hope is to reach them and offer them hope and support so a fundraiser us great so that the money we get [can] help baby Abshir and other in Wajir. This part of Kenya is most affected with my children suffering. It’s a very hot place so heat intolerance is so great.

I don't know what we can do any suggestion in this is great so basically we would need help with creams, eyedrops, and even monetary so we can be able to achieve the goal of reaching out to this other kids. Mostly I need to travel there to create awareness in this community and connect and give them moral support."

The journalist told me that when the Wajir children’s parents were told Ichthyosis is a genetic condition, they blamed themselves, believing they caused it.

Oh my heart.

Parents, please don't blame yourself. Many parents don't know they carry the gene until their child is born with Ichthyosis, though it can be screened for during pregnancy. (My parents didn't know, and they've since been genetically tested and both carry the gene. It was passed to me recessively.)

The children have been hidden away from their communities – because disabilities carry a lot of stigma and shame in third world countries. Again, tears.

These kids need to be shown love and compassion and that they're a valuable part of the community. It starts at home and with medical staff. Communities need to be made aware of disabilities - that they aren't caused by witchcraft and that people with disabilities aren't to be hidden away and ashamed about.

The stigma is as painful as the skin condition.

In a paper titled Reducing Stigma and Discrimination to Improve Child Health and Survival in Low- and Middle-Income Countries: Promising Approaches and Implications for Future Research (Nayar et al, Journal of Health Communication, September 2014), academics discuss the impacts of stigma on the development of children with chronic illnesses and disabilities.

"The manifestations of stigma can lead to a number of stigma outcomes, such as delayed treatment seeking or poor medication adherence, that ultimately lead to longer term stigma impacts, including poorer quality of life and increased morbidity and mortality. For children under 5 years of age, stigma and discrimination experienced by parents—for example, as a result of having a stigmatized disease such as HIV or belonging to a stigmatized group such as the scheduled caste in India—can impede access to or uptake of available health care services, leading to poor health outcomes for children."

The paper suggests stigma and discrimination reduction methods should be implemented into infant and child health programs:

"Increased investment in stigma and discrimination reduction interventions and program evaluations is also needed to overcome the evidence gap regarding stigma and discrimination reduction interventions. Program implementers should prioritize regular inclusion of measures that assess stigma and discrimination in evaluations of all interventions targeting neonatal and child health and healthy early childhood development, including interventions addressing integrated care of mother and child. The field would also benefit from improved, more detailed reporting about the content of community engagement, communication and counseling…"

I am concerned that the stigma around these children has prevented them from receiving adequate education opportunities, thus preventing them from entering the workplace, and perpetuating a cycle of poverty. Esther’s story is proof that the stigma can be broken.

Another academic paper I read (The Stigmatization of Disabilities in Africa and the Developmental Effects - Digital Collection, 2013) states:

"It is widely believed in areas like Africa where stigmatization creates negative connotations that the employment of persons with disabilities would cause a less productive workplace, due to special needs and slower production rates." The paper provides examples of terrible human rights abuses, but also provides suggestions of the benefits of inclusive education, as well as inclusive advocacy efforts to help shift attitudes of governments, policy makers and financial institutions. "One example of how this can be accomplished is in the case of AbleChildAfrica http://www.ablechildafrica.org/, where children have a say in everything they do. The Board meets with the communities two to three times per year and consults with their local partners regularly. These partners work with children everyday so they see what works and what does not in terms of program implementation. The partner organizations also work with the families of the disabled children in order to move away from the idea of just leaving the child to be taken care of by someone else and not included."

Ethan, who is 10, wrote some advice for these children. He wants these children to see they're not alone. I love his wisdom.

"Having different skin is nothing to be ashamed about. I have Ichthyosis just like you😀. Even though you have different skin you should know that you are the same as anyone else on the inside. I know it must be hard to stay cool in the hot weather in Kenya. We're all the same, if I had went with my mom she would have treated me as well as she could in that environment for even a week or two. It can be hard even here in North Carolina where it's cool some of the time. Even now my skin has been through a lot more than most people. Even with lotion and a cooling vest I still can get really hot and uncomfortable here. I can only imagine how much more challenging it could be with so few resources.

My mother told me that you are having a lot of trouble getting the supplies you need. I was glad to see you were more comfortable with the lotions that you got in Nairobi."

Here's a photo of Ethan and his Mum Erin. Erin is incredibly proud of her son.

So here’s what I’d like the parents of the Wajir kids, and the wider community, to know about Ichthyosis. It seems so simplistic, with the complexities of the treatment and perception of disabilities in the third world, but it's all I can do.

• Ichthyosis is a genetic condition.
• It's genetic and not contagious.
• There are many types of Ichthyosis with varying symptoms, appearances and treatments.
• Regular showers and baths in clean warm water, and applying ointments such as Vaseline can help.
• Adequate nutrition helps - fresh fruit and vegetables, meat, dairy, plenty of water.
• Once the children's skin is managed, they should be encouraged to get an education, form relationships and get jobs.
• You are not alone.

Here are some other resources from medical experts about treatment:

From the Royal Children's Hospital, Melbourne,

From Dermnet, New Zealand.

I can only hope that now these children in Wajir have been "found" and received some media attention, an education program can be provided to their parents, medical staff and the wider community. As well as reducing stigma, they could get the medical treatment they need, as well as being included and valued members of their community. I also hope their doctors can look to adults and young people with ichthyosis to see how we’ve managed, and also to show these children and their families that a good life is possible. While it has been hard for me to connect with this community, I hope that this blog reaches them somehow, and they can see they aren’t alone.

If you live in Africa and want to tell your story of life with Ichthyosis, you are most welcome to leave a comment below.

This is the second post in my series "Ichthyosis in developing countries". You can read the post about Ichthyosis in India here.