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.