This is a guest post by a friend Ashifa Sarkar Vasi, who has a daughter who has infant eczema. I received the book : I have eczema.. so what – to review and thought of asking Ashifa to do it since she may relate to the book more than me. Thank you so much Ashifa for writing this post!
My 4-year-old daughter has infant eczema. Though her case isn’t severe, she does have dietary restrictions (no dairy, nuts or shellfish), needs a careful daily skin care routine (with various creams), and has small rash patches at her joints when her eczema flares up. Otherwise she is just like any other child. Infant eczema is different because a child typically grows out of it by the age of 5. I am still hoping mine grows out of it!
As a mother of a child with infant eczema, I was excited to read this book. It hit close to home and touched a full range of emotions in me, from tears to fear to respect.
A few nuts and bolts first.
This is the story a 6-year-old girl, Maya, who is dealing with eczema. The 24-page, sweetly illustrated book covers the whole illness: from diagnosis to life-long coping (though it ends while Maya is still a child, albeit an older old at 9 years). It is written by Anindita Guha Maulik Rungta, a mother who wants to share her daughter’s story of having severe eczema. So it is based on a true story and aided by their dermatologist, Dr. Amrita Talwar.
Its audience and benefit.
The book is clearly targeted to children with eczema and their families and friends. It would help a child with eczema not feel alone and weird as well as serve as an important tool to sensitize family and friends about the condition. It is like a one-stop book for understanding eczema. It is also definitely meant for an older child; I would not to read it to my 4-year-old, it is not appropriate for someone so young (I think it would scare her more than help). I imagine children around age 8-10 and older would be an appropriate age at which to introduce this book. The additional nutritional assistance and support groups that the author offers would also be tremendous resources.
What I respected.
The daily life struggles and challenges she faces clearly depict the physical, social, emotional and mental consequences of the condition. I particularly like how each member in the joint family plays a role in her coping with eczema. Practical solutions abound in the story, making it easier for the reader to learn and even follow if necessary. And straightforward, scientific descriptions are woven into the story nicely. Overall, the writing is simple to digest (which means well-written) and captures different moments wonderfully. You certainly feel transplanted into Maya’s head and world.
A few reservations.
For me, reading the book actually left me a bit more worried. My head starting thinking a million miles a minute about what if my daughter has it long term. And the more I thought, the more I was worried about different aspects. Though the book addresses many issues, the problems are complex. I cannot imagine never eating out again as a family. I cannot imagine being solely responsible for cooking all meals for my daughter forever (in the book Maya’s mother is the wonder chef). That’s a lot of responsibilities for the mother alone. There are no alternate solutions presented to these, like finding an accommodating restaurant or sharing the cooking. Also, the differences in eczema severity are not mentioned. Maya is clearly a severe case and the other milder forms are not talked about at all. I wish the book had. I also wish they had talked about adulthood a little bit – if it is different or what are some things to expect.
In relation to my experience.
My experience with my daughter has not been so extreme as Maya’s, but I could relate specifically to food restrictions, like at birthday parties. In India, understanding about food restrictions is limited. As my daughter should not eat dairy, I often find it hard to explain to others why she cannot have a chocolate or cake or milk or cheese or the like. But my daughter is so clear and confident that she cannot have it that she usually says it to them herself! However, thankfully I have not encountered bullying, cruel questions, reduction in physical activities, changes in laundry routines or emotional breakdowns to date. But like Maya, my daughter is surrounded by a wonderfully supportive family.
Overall, I would recommend the book to older children with eczema and to their family and friends. It is certainly a worthwhile read as it presents a vivid view of what it is to live and cope with the skin condition.
Thanks for reading !