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.

 

Australian Centre for Leadership for Women Diversity Awards

On Wednesday night I had the pleasure of attending the Australian Centre for Leadership for Women Diversity Awards in Sydney.

From the website:

"ACLW’s Awards Program commenced in 2006, culminating so far in three national awards for women’s advancement, with more than 60 national recipients being recognised and awarded, including women, men and organisations. This year is ACLW's 10th Anniversary of its Awards Program for women's empowerment. The 2016 Diversity Award refines the spirit of ACLW's Award Program as it seeks to platform in a mainstream forum, recognition for community and organisational initiatives in Australia that value and empower women in Australia who come from diverse backgrounds, and particularly from groups that are marginalised."

Dr Diann Healey Rodgers runs the Australian Centre for Leadership for Women voluntarily and entirely on her own.

We were treated to performances by the Sydney Gay and Lesbian Choir and a troupe of Greek dancers. The presenters included Prue Goward, Christine Forster and the speaker of NSW Parliament House Shelley Hancock who was hilarious.

I was a second place winner in the Disability category. I won because of my work organising the Australian Ichthyosis Meet. The category winner was Women with Disabilities Victoria (who I am doing some work for next week) and the third place winner was South East Centre Against Sexual Assault. Here are the two other category winners - Keran and Dagmar.

Every first place winner made a speech and they wowed the room. From domestic violence support and refugee welcoming to providing child care for women in medical research and climate change research and prevention, the work these women do is so important.

I am so honoured to be recognised in a room full of amazing, accomplished and diverse women truly making a difference In Australia.

A big congratulations to Kyri Fuss for being a co-recipient - one of the 75 beneficiaries of the Australian Ichthyosis Meet. And thanks to the Australian Centre for Leadership for Women for the award, Professor Ingrid Winship for the reference and ongoing support, the Ichthyosis community especially the attendees, the supporters of the Ichthyosis meet who made it happen, my wonderful Adam and parents, Layne Beachley and the Aim for the Stars Foundation, the Awesome Foundation, FIRST and UK Ichthyosis Support Group and my wonderful blog readers and social media followers for helping me along the way. ❤️

In my entry, which Kyri (above) provided a supporting statement for, we both said the meet was something we could have done with when we were young.

Oh and if you think my life is all pretty dresses, fancy meals and glamourous award ceremonies - you'll be pleased to know that I am grounded (literally).

After the awards ceremony at Parliament House, Kyri and I got back to the hotel, I bought some cheese and crackers, and then got changed for bed. As I came out of the bathroom, the heavy door closed on me, making me slip on the carpet and pushing me over. I hit my head, knee, shoulder and bottom. Ouch but laughing. A bit bruised now!

We stayed up til 11 pm raging to This American Life podcast (I fell asleep halfway through the first act).

Ha!

You can read about all the winners here.

 

 

Ichthyosis in developing countries - India

 

Last week, an article was published about two young siblings in India living with Lamellar Ichthyosis. The article describes the children as having snake skin.

Sayali (13) and Siddhant (11) Kapase live in Pune, India. The children, along with the parents, Sarika and Santosh Kapase, spoke to journalist Charnamrit Schadeva about the struggles of living with Ichthyosis.

The journalist's Twitter account shows she specialises in writing about children with facial disfigurements and rare medical conditions. The article about the Kapase children sits above previews of these types of articles. Like many other articles about Ichthyosis, the language is disempowering, and while it does raise awareness of the condition, it also heightens stigma. (One article about the children in a different publication came with a graphic image warning.)

The article covered the treatment the children undergo, and comments from a dermatologist (he assures readers the parents are not related, and speaks of the parents both having a "mutated gene", so Ichthyosis "was unavoidable for the children". But it's the attitudes towards the condition that concern me.

My heart hurts for these children, who do endure prejudice and exclusion from "frightened locals" because of the way they look. They were denied entry into several schools, and the children at their current school are too scared to play with them. They have little confidence in themselves, and really, can anyone blame them?

From the article:

"Sayali, 13 said: "I'm disgusted when I see myself in the mirror. I wonder why God made my brother and me this way. People call us names like ghost and witch. I aspire to be an accountant but I wonder if anyone would offer me a job with this condition."

The article continues:

"Sarika now worries for Sayali's marriage prospects in the future and wonders if any man would accept her as a bride."

"I cannot dream like other mothers do for my daughters wedding", she said. Every mother has aspirations to see her daughter growing up and getting married. I do not feel the same. No mother would like to see her children in this condition."

It's terribly sad that even their parents have given up hope. I hope that they can see that there are many of us with Ichthyosis who have been educated, found love and have good lives. If their parents do not have hope, how can the children feel good about themselves?

What I hope this family can know:

• Your children are beautiful, smart, articulate and kind.
• You are not alone.
• There is support out there. There are Facebook groups to connect with other parents and children, blogs (mine, DeDe's, Courtney's, Mui's and more.) The Ichthyosis Support Group and FIRST have good resources too.
• Never be ashamed of your children.
• Many people with ichthyosis lead active and fulfilling lives - with education and careers, relationships, friendships and travel.
• Medical support is important but emotional support is just as important.
• Focus on managing the condition day to day instead of worrying about the future.
• Pride and esteem in your children starts with you. Be proud of your children - and express this pride to people you meet.
• Self love is important. If these kids can love themselves, then love will come to them.
• Please be careful what you say to the media. Media covering Ichthyosis can be exploitative and voyeuristic. This can have a huge impact on your children's esteem as well as the wider ichthyosis community.
• It gets better.

A friend sent me this article in the Guardian the same day I read the article about the children in India. The article addressed the way girls and women with disabilities are treated in countries like India, where women are expected to marry - except women with disabilities are not.

Nidhi Goyal writes:

"Kasturi, an Indian girl with polio, wants to marry but her mother believes no one will have her because she will probably be unable to take care of the house.

Women with disabilities make up roughly 5% of the world’s female population, yet many are not considered "woman enough". Their capability is questioned – can she cook? can she raise children? – along with their sexuality and entitlement to equity or rights. If they fail to meet idealised expectations about how a woman’s body should look, they are deemed incapable of providing care.

Sadly, this view of women with disabilities being "broken" or of less value has been adopted by the women’s rights movement, which has been slow to make space for them – if not actively resistant."

Reading Nidhi Goyal's words made me think of the (low) expectations Sarika Kapase has for her daughter Sayani's future. But I was very aware of me not being the right person to make an informed comment on the family's despair. I can't fully address this without coming across as a first world privileged white (red) saviour.

While I have lived with Ichthyosis my whole life, I don't know what it's like to live in developing countries.

I experience staring and comments, and the pain of course, but in Australia, the stigma around the condition is almost incomparable. I acknowledge my western privilege and also the complexities of visible difference and disability in other cultures.

While I wrote "it gets better" in my advice list, I don't think the attitudes and access to treatment in developing countries ensure that it does get better.

So I asked my friend Tina to write about her experience with ichthyosis in India. Tina has written her story here before, and some readers donated through this blog so she could get a cooling vest. Tina has the same type of Ichthyosis as the Kapase children.

Here's Tina's story of what it's like to live with Ichthyosis in India - from the physical aspects to the reactions and ignorance of other people.

"I was born as a colloidal baby with severe or chronic type of Lamellar type 3. I have severe challenges handling both cold and hot temperature. I work as a Training consultant.

The reaction of people is quite visible, The facial expressions , some stare and some just don’t like the sight of me, it seems they are horrified by my sight, I am emotionally, mentally and physically down in every aspect. Every time I think today will be a nice day, but the snide comments and stares all mar my day.

I started taking Acetretin since 3 years. From my bath , scrubbing, washing and creaming it takes 3 hours to get ready. I am totally exhausted and drained even before my day begins. Simple chores seem a herculean task. I wear clothes that cover me from head to toe, be in Summer, Winter or Autumn. I spend ¾ of my salary on the medicines, Vaseline, creams, Glycerine. Icthyane, Glyco A cream, Band aids, Cotton bandages and swabs, Eye drops to prevent eyes from drying. I have bathe 2-3 times a day and wash face and hands many times at work as skin gets dry, scaly and poky all over.

I do not have any medical treatment available in India. The dermatologists are still clueless about my condition. The medicines and creams and lotions that I use is from the ideas and suggestions shared by FIRST group that I met on Facebook 4 years ago. Indian government should include Icthyosis under sever disability category. I cannot take leave from work as they say if you want to work here you have to be healthy. The people in the corporate world also should understand us. At work place, I told my colleague that I have to travel to see a visiting dermatologist, he was coming from London and I wanted to go, The colleague says you can go next time, They are that ignorant in India.

It’s not only the superficial layer of skin that is affected, Due to Ichthyosis, I have very low levels of Calcium, Vitamin D, Vitamin A, Vitamin E, Potassium and Magnesium, all these minerals are deficient or absent. My head and scalp are so bad that it scales, sheds and itches very badly. I scratch so violently that the scarce or just a handful hair falls, making it even scantier. Even if I squat or sit on the ground the skin stretches in several places and immediately snaps and fine cuts appear all over. I do not remember a day being free from physical pain. I feel it’s a part of me now. Pain and I are synonymous with each other.

I am highly Myopic and the being visually also makes my life difficult. I am blind in right eye due to Glaucoma. The left eye is highly short sighted.

The reactions to my skin changed over the years, but just a little. Very few understand and empathize. There are some who blatantly tell that I ask for self-pity, I get upset when I do the same amount of work that others do but for me I go through a lot of pain physical and emotional and still they do not acknowledge and this makes me more bitter.

Parents and Family are the greatest support system. I am proud that my Mom was my biggest support system. People treated her badly saying that she was a sinner that’s the reason I was born in this condition. My own cousin called me names as I have leprosy, she is married and 40 years.

There is a Man Called Sai Charan from Nalgonda. He has Lamellar Ichthyosis . He never used Vaseline or Glycerine as his dermatologist never suggested anything. He uses only coconut oil. He is looked after by his old grandmother who earns a meager income. He is worried about his future and always is depressed. He says that life is laborious for him. He does not know that we all go through the same stage. There is Nagesh from a remote village in Telangana. He has two sons who are affected by Lamellar Ichthyosis. He too is seeking financial assistance from the government, but no avail.

There is a lady, Gloria, who has Vulgaris Ichthyosis, I buy her soaps a, Vaseline and Glycerine for her. She works in a school. Her hands and feet are cracked and bleed as she is constantly in water. The Principal of the school does not allow her to work inside the school and she is outside in the hot sun the entire day. The School Principal says that she cannot allow Gloria to work indoors as the school children will get frightened and scared by her appearance.

Even in the church she sits behind in a corner as people don’t sit next to her because of the odour that emits.

I get angry and upset when I see such articles. How can educated people use such statements? I feel they don’t have values.

[To those without ichthyosis and disabilities]: Please understand that what we have and go through is not easy for us. We are already Physically, Emotionally and Mentally distraught. We too long to lead a normal life . There are many things we cannot do, as the pain in the bones is almost crippling. And the cracks and fissures are painful and bleed under duress. Please understand us and have patience with us."

I wish Siddhant and Sayali all the very best with their treatment, and I hope they reach a level of positive self acceptance once day. I hope this post is passed on to their parents and their community.

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

This is the first post in my series "Ichthyosis in developing countries". The next post will be published soon.

 

 

Language really does matter when reporting about people living with Ichthyosis. Harper's real story.

 

This article from Stock News USA came up in my google alerts yesterday morning. You can read the full text here.

 

"Suffering from horrible harlequin Ichthyosis."

"When she was born, she looked like an alien. It was very traumatic"

"Her bizarre condition."

Those three excerpts is all I took from the article, and I am someone with Ichthyosis.

The language used in this article about a beautiful baby with Harlequin Ichthyosis is so othering, pitying, sensationalised and disempowering it's no wonder some people with the condition question their self worth, and people without the condition are shocked by it.

I was so saddened at this language to describe one of my people that I didn't take away that she is loved, that she is oh-so-cute and that she will most likely have a good life with the right medical care and emotional support.

What are readers who *aren't* affected by Ichthyosis getting from the story?

This language gives readers permission to be shocked by Ichthyosis. It perpetuates the idea that we are objects to be gazed at, that the condition is shocking and

Awareness raising through tabloid media. Stripping dignity from people with Ichthyosis every day.

I asked Harper's mum Angie and grandmother Charlotte what they thought of the news story, and what they'd like the world to know about Harper, given the reporter missed so many details about Harper's personality and beauty.

Charlotte said:

"I thought the article, except for a few mistakes, was pretty true on. I wish they had elaborated more on what is Ichthyosis, what causes it and that there is NOT a cure. I want people to understand that this condition is not "contagious", that these children (and adults) can have full lives. They are not a "freak" show, they are humans with real feelings; real challenges; real needs, just like everyone else! I realize that Harper will look "different" but that "different" makes her UNIQUE. She is a beautiful, loving child who will grow up surrounded by love. She will go to school and learn just like every other child. I think that but getting the correct information out, people LEARN about the condition and the challenges. I know, for my own self, I have been forever changed because of Harper. This change is a GOOD thing! People are curious when someone looks different and that is why educating people is so darn important!"

Charlotte continued:

"I think Harper is simply adorable and when she smiles at you, it warms your heart! I walked in the house the other day to pick up the two older children to take them to the movies, and Harper was sitting in her highchair munching out on banana. She saw me, smiled and then growled at me. I growled back and she got this smile on her face and giggled. It was so cute! She just melts me!"

Angie, pictured with Harper above, told me:

"Harper loves eating, her new favorite are bananas that she feeds to herself. She loves when you sing & dance with her. She is the biggest Mama's girl ever. She will be dead asleep and hear my voice and wake up and start kicking & squealing like crazy. I ❤️ it!! If she had it her way, I would just carry her all day. She's trying to talk and ends up growling. Lol. She loves playing with her sister, Sam who is 17 & brother Jaxon who is 6. She loves cuddling with her Daddy at nighttime. Harper also just learned to shake her head no, it's so cute. She brings so much joy to our family and we are so blessed by her beautiful soul."

There's a gofundme to raise money to buy Harper a Microsilk tub. Click here to donate or share.

I was disappointed to read yet another sensationalist article about a child with Ichthyosis. But I'm very glad to get to know more about little Harper through those who love her. I really do wish the media would focus on showing people with rare medical conditions in a more positive, holistic and less pitying light. We are not here for clickbait, exploitation and sensation.

Courtney Westlake wrote a brilliant piece about the gawkers that Brenna encounters this week, and I think her response to "Look at her" applies to this article about Harper too.

Just look at how beautiful she is and what a wonderful life she has ahead of her. And look at how those who love her have written about her. There's optimism and appreciation and a real sense that she's a whole person, not "horrible Harlequin Ichthyosis". Her mum and grandmother's words will make a stranger more 'comfortable' about this rare, often confronting condition than the tabloid article I've pictured above ever will.

Language really does matter when reporting about people living with Ichthyosis.

Here are some things to consider if the media asks for your story about living with Ichthyosis.

Here is People with Disability Australia's guide to reporting on disability.

 

 

 

 

 

 

 

 

9 Instagram stars who have Ichthyosis. (And please consider buying me a drink!)

A while back I wrote about the ways you can use instagram to connect with the chronic illness community. And my mate Starbrite Warrior wrote about this too. It's so ace to connect with others who know what you go through, isn't it? And Instagram is a good platform to use when you're not feeling great - as it just requires a thumb for scrolling, and some emojis if you're not really up to typing a lot! Also, taking selfies and sharing photos can be great for the self esteem of people with chronic illness and disabilities. What's not to love?!

I've found some great people who have Ichthyosis on Instagram - and I LOVE seeing their adventures in pictures.

As a part of Ichthyosis awareness month, I contacted them to ask if I can showcase their instagram. They all said yes! Here they are in their own words. They are so interesting and smart and I love them all. And they are all BEAUTIFUL. Go show them some love. (And I'm on Instagram -@carlyfindlay.)

@Clonecollector

 

"I suffer from a lot of other illnesses and currently just diagnosed with elhers danlos syndrome. Quite interesting because I don't see Ichthyosis Vulgaris and elhers danlos syndrome cases.

I'm from LA, but I have family in in Alabama also on my fathers side. I love going to the beach and it's become harder and harder due to photosensitivity and other medical conditions. I used to play tennis competitively until I could no longer.

My last diagnosis waselhers danlos syndrome, which has been invading my life in the physical, effecting my mobility. I plan on advocating Medical marijuana and cultivate my organic hair and skin raw line.

I've been taking care of my skin and hair needs due to deficiencies with my own remedies that I can't wait to finally share this year. I have very neglectful parents and I was on an 8 year quest after leaving the radiology dept on medical leave to find out what was goin on. I have a rather large medical web of things going on from lupus to dysautonomia to ichthyosis. I finally got diagnosed after several doctors had seen me all of my life, in May 2014."

@2PuenKtchen

"I am 27 from Germany. I'm a special education teacher. Happy, blessed christian girl from Germany. My faith keeps me strong because I know that Jesus is nothing but good. I know that he made me perfect! I am not a mistake. I am wanted.

I love my hair. They are growing since 2 years.

It's such a difference having long hair as a woman.

I love to laugh. I live to be joyful and I have so many reasons foor being joyful: I have the best family and greatest friends."

 

@Bumblebeemick

I'm Brittany - I'm 28 years old. I didn't know I had ichthyosis until I was college every dermatologist I went to said I had eczema clearly I don't lol. Since I was little, my mom made sure to tell me that I was beautiful and God made me the way he wanted to make me. She also made sure I looked in the mirror and tell myself: "I love me". And because of that I truly love myself and am grateful God chose this path for me.

I'm also a lover of fashion. I love to read & spend time with family and friends."

@Kiavvyeh

"My name is Kristin. I am in Alabama, USA where I'm a phd student in composition and rhetoric in English studies.

And... I dream of making higher education more accessible to those with disabilities. That's what my research focuses on, and how I combine advocacy with my professional work."

I love Kristin's dream!

@TinaSmith13

"I'm from Kansas. I have EHK. I was adopted by two awesome people who also adopted my bro who also has a disability.. I work a lot, mostly different photography and make-up projects. Plus a caretaker for a friend with CP. Side work Right now I'm slowly working on a documentary and YouTube project about living with ichthyosis. I do a little modeling gigs. I like to keep busy. :)"

@MissBrianna_Jane

"I am 26 years old, born and raised in Melbourne. I have congenital Ichthyosis vulgaris. I love to travel and try new things.

I work full time and study full time doing my bachelor of business major in event management. :)"

(I met Brianna in April and we could not stop talking. So great to meet her - friends for life!)

@K.Idella_

 

Kelly featured on my blog last year. She's in her 20s and lives in Missisippi. I love the confidence she exhudes. She's developed so much confidence and has been doing a lot of great things to educate people about Ichthyosis, and development her sense of style and self worth. Just recently she did her first modelling show! So proud!

"When you go from, "You're stanky." Or people not wanting to touch you because of your skin. To hearing, "You're beautiful." Or people wanting to meet me because of the awareness I've been spreading. This is the transformation of all times. Skin always been poppin'. Just have the confidence to say it. #YouCantTellMeWhatGodWontDo #SkinOnFleek ❤️😘"

I LOVE THIS!

@RafJonathanTan

"I'm 20 by this Dec. I like playing music and listening to music, I use instagram to connect with friends. I live in Malaysia."

 

@Fiqasani

"My name is Syafiqah. I am 26 years old and im from Malaysia. I am doing online businesses, i am selling scarf and life insurance policy.

I like to explore new things in life so that I can be more adventures in the next time.

I like to buy things online too!

I like to feed stray cats - I am a cat lover. Do check my stray cats Instagram @kucingjalanannn which stands for stray cat 😁

The reason I love Instagram so much is because I can see my families and friends new updates."

I adore Fiqasani's fashion!

Hope you enjoyed meeting them as much as I did.

Also, please note that before trying any treatments my friends have mentioned, talk to your doctor and psychologist. There are many variations, symptoms, appearances and seventies of Ichthyosis and what works for one person might not work for others.

❤️

This is the last post for Ichthyosis Awareness Month 2016. I hope that I have done more than raise awareness, and made you think about acceptance (of self and by others), and the media representation of the condition, and introduced you to some great people. I've got some more posts about Ichthyosis coming year round - thinking critically of course.

You can read this year's posts at:

Ecdysis. Tender soles.

Vereniging voor Ichthyosis Netwerken

How to cope with the emotional aspects of Ichthyosis - advice from people with the condition

Choosing clothes to accommodate ichthyosis

Crystal's video

Using Moo Goo cream to de-scale the scalp

When the media directs you not to google Ichthyosis (and what I'm doing to change that)

Rethinking Kindness - True Blue Hand

Ichthyosis Awareness Month 2016 - we must move past awareness raising

And catch up on the 2013, 2014 and 2015 posts.

Thank you for reading about Ichthyosis again this year - I hope we've moved past awareness.

❤️

I have a favour to ask, please.

You know, I've been blogging for quite some time. Almost seven years here! And I am really proud of what I've produced. There are some great resources here for you - scores of posts about Ichthyosis and appearance diversity that are really helpful. I know this because you tell me. You search for and share the posts, and I'm so grateful. Thank you.

Apart from the very occasional sponsored post, I don't get paid to write this blog. I spend a little money on the blog - online storage, apps, graphics and getting people to edit my posts when I'm really busy. I come home from my day job to write because I love it. There's a lot of time involved in blogging - this post took me four hours. Most posts take me up to five hours. I also manage social media and answer countless questions asking for advice about Ichthyosis and general disability issues. People ask me to help them with blogging and socials media. My blogs are used as classroom and business resources. Sometimes I am asked to edit work or give interviews. These are GREAT OPPORTUNITIES but take time and expertise.

I've been listening to a few podcasts talking about backing ourselves, and asking readers to show us they value our content by paying us what they can afford. So that's what I'm doing today.

I am thinking of setting up a Patreon (crowdfunding) account to support my blogging - so I can continue bringing you quality content, and spruce my online home up a bit. I plan to finally make this a dot com! I can keep writing but outsource the stuff I'm not good at. While I look into Patreon, I've signed up to a PayPal business account (I have an ABN and everything!).

I ask that if you value my work, if it's been useful to you in any way, if it's made you laugh or cry, and can spare a few dollars, you might consider supporting me. Think of it as buying me a drink. (It can be a cocktail, a wine, a hot chocolate or even a bottle of water!)

You can click the Paypal button below and give whatever you can afford. Or share this, tell people about my blog. I so appreciate it. Thank you.

 

 

 

 

 

 

 

 

 

 

Ecdysis. Tender soles.

I was reading about how angry snakes get when they shed their skin. One animal carer said he observed a skin-shedding snake to lose most of its vision and wouldn't let anyone near him.

The process is called Ecdysis. Ecdysis is a necessary process for growth and movement, and happens to snakes, lizards, turtles and iguanas. These animals go off food, and they're very sensitive to touch during and after the shed. And I expect dinosaurs experienced ecdysis too. Imagine how angry they'd get during a shed?!

Every year and a half or so, my body undergoes a big shed, not just the daily shed. Sometimes it's fully body but usually it is limited to my feet and hands. This shed often means my skin comes off in big pieces - in the shape of my hand or foot. Ouch. (I've written about the big peel here.) My appetite is still the same, of course!

People with other types of Ichthyosis shed big prices of skin more frequently than I do. I'd rather not scrub to peel because it hurts - it thins the skin and leaves it burning. So many different variations, symptoms and treatments for this condition!

Right now my feet are shedding. It's a slow process - it's been happening for about a month. Each time I arch my foot or take a step, I am acutely aware of my skin. My feet tingle as the old skin comes away, making room for the new skin.

The old skin stretches and shrinks. It's like milk skin. Strudel pastry. Thinly rolled pizza dough, before it's been topped and baked. Though not delicious, because it's on my feet.

The new skin is initially soft and supple, but it's a long wait. By the time I lose the thick layer, the new layer is almost as hard as the old layer was.

I don't know what it's like to have skin that isn't painful or scaly. I do know that when my body is comfortable, I can't feel specific organs like I can feel my skin. I asked Adam this question - whether he can feel his skin? He said he knows his skin is present, but it doesn't feel a certain way. It just is. He said he notices his skin is there when it peels.

I feel so aware of my skin - the way it shrinks and tears, and flickers with itches. The way it cracks and bleeds and flakes. The way it stretches over my face in the morning, making me hide away from the world. I'm embarrassed at the way powders all over my work chair - screaming "Property of Carly" - and no, black wasn't the idea colour for a piece of reasonable adjustment equipment. I'm 10 times more embarrassed when it falls below me in the work bathroom, like talcum powder. And it flings all over the shower walls when I wash my body. I wipe it down so it doesn't gross others out. Skin, hey?

When I'm relaxed, my feet are curled inwards, like they're emerging from being bound. There's daintiness in them, but no beauty. They're like half peeled potatoes.

Occasionally I give them a salt bath, and then gently bandage them - breastfeeding pads below thickly applied antiseptic cream cushion my tender soles. And I am a tender soul during this ecdysis.

I wonder what I can do to speed up this shedding process - the fastest way with minimal pain and infection? Can I induce the rebirth of new skin? I have friends who are doing this feet shed voluntarily - putting bags over their feet, then waiting until smooth skin appears. But this is my life, involuntarily. I probably won't use Milky Foot or a pumice like my mum did to smooth her feet in the 80s, or a power tool. I'll just wait, in intermittent pain.

The beauty industry saying we need smooth feet - with all sorts of products on the market to buff, polish, moisturise and preen them so we can confidently wear sandals. Just as well I've mastered the art of pretty dresses, stockings, cute bunny socks and enclosed shoes, then! Fashion makes me happy when I feel like an angry dinosaur bursting out of its skin.

This post is for Ichthyosis awareness month. I realise it's way more information about the medical side of things than I usually share. For more about Ichthyosis, click here.

Ichthyosis Awareness Month: Vereniging voor Ichthyosis Netwerken - the Dutch Association for Ichthyosis Networks.

My friend Karin from Holland writes for Ichthyosis Awareness Month today. Karin runs Vereniging voor Ichthyosis Netwerken - the Dutch Association for Ichthyosis Networks.

She's doing an amazing job to bring together people with Netherton's Syndrome (the type of Ichthyosis I have) in her country. I love the idea of a support group being run by people actually affected by the condition. And she also told me how the group, plus doctors, are focused on both the physical and emotional aspects of Ichthyosis. So important.

Meet Karin.

"Carly Findlay invited me to write a guest blog about my living with, and work for Ichthyosis.

My name is Karin Veldman, I live with my husband and two cats in Assen in Holland. I am not working anymore, but I spend some time raising ichthyosis awareness. I love knitting, and singing in a choir. I did a study in applying singing bowls for massage. I used to work in a hospital for a mental health.

I have Netherton Syndrome. I had my diagnosis at 39. Before that, I knew I had some kind of ichthyosis, but I didn’t know what form it was. I was born with the condition and I have spend a lot of time visiting doctors. One of them told me to expose myself in a museum, when I asked him if it could be Netherton Syndrome. This still makes me cry. In my younger days, I was bullied a lot, because I looked different. This is leaving scars on and under my skin. Sometimes the memories come back as if it is happening in the moment, called PTSD.

This is Lisette and Nicky.

In Holland, all people with Netherton Syndrome know each other. We were brought togetter in 2009 help a little girl, fighting for her health. Our first meeting was so special, so much emotions were shared. We heard other people tell our story…amazing. We are still meeting each other. In 2013 I wrote the website , also available in English.

Suzanne Pasmans, Dermatologist, immunologist and Professor of Paediatric Dermatology in the Erasmus Medical Center in Rotterdam is leading lady of the Netherton Expertise Center in Holland. Suzanne is pictured below.

This Center is doing research on the syndrome. There is a lot going on at the moment. They want to know more about our immune system. They want to know what the protein LEKTI means to our body. Where should it be working? What is missing? We all had to go to a medical photographer. Blood samples were taken. We all visited a psychologist, to talk about our experiences with the syndrome. The Netherton Expertise Team is a multi disciplinary team, they do very good work. They are working hard to raise awareness for European Expertise on Netherton Syndrome.

In December 2015 we started the Dutch patients association Vereniging voor Ichthyosis Netwerken. Now, five months later, we are proud to announce we have almost seventy members. And we are groing bigger. I strongly believe in that. My other board members voted me for president, so now I am the leading lady of this association. But we cannot do without our members. I am so aware of the importance of us doing this, it brings togetter so many people sharing the same experience. We lately had our first Meet and Greet. It was so great to meet everybody. There were a lot of stories, a lot of emotions. Our medical advisors were under the impression of what was shared. They think health care for people with Ichthyosis needs to improve!

Our goals as an association are to raise ichthyosis awareness. We want to know all about other peoples stories. We want to organise meetings, live and online. We have started a facebookgroop Vereniging voor Ichthyosis Netwerken. There is also our website. Our first Meet and Greet learned us about the importance of this. People with Ichthyosis need our support, they need medical support. Everybody deserves a good chance.

On this picture you see, from left to right, Eline (who has netherton syndrome), Eline's mother Anita and me.

On this picture you see me and my little friend Savio, and his daddy. My friend Eline was helping at the meet and Greet. She is standing at the door.

Another goal is to raise a big International Netherton Network, with our association as a solid base. We invite you, to become an international member of Vereniging voor Ichthyosis Netwerken. Togetter, we can make some difference!

This is our handmade mascotte VIN."

Carly, thank you for giving me a chance to write on your blog. Kind regards from Holland."

Find out more about the Dutch Patients Association on their Dutch website, their Engilsh website, the Netheton's Syndrome website, and join the Vereniging voor Ichthyosis Netwerken Facebook group.

This post is for Ichthyosis Awareness Month. Read more about Ichthyosis here.