A Kid’s Book About Scleroderma
‘My Mom’s Special’ By Andrea Oakland
By Karen Vasquez
One of many challenges faced by patients with scleroderma:
The effect on the children of patients.
The story is told in the voice of a young daughter about daily life with her mom, who has scleroderma. There is no talk of flares or emergency room visits. I love that about this story. There are plenty of stories of complications and very few are just about a regular day with scleroderma. The scary stories are a familiar occurrence to scleroderma patients, but they are only a part of the story. The long haul with scleroderma really is about acceptance and finding a way to be a part of life with loved ones.
The beautiful illustrations show the pigmentation changes, hand contractures and facial features in a gentle way. Changes from scleroderma are rarely shown in such a gentle light because it is hard to photograph. These illustrations are another welcome change and by the end of the book, the distinctions between characters without the facial features of scleroderma is difficult to notice. As though the illustration makes those features look “normal”. For a scleroderma patient, that is normal and it’s nice to see that blending as opposed to the often harsh distinctions shown in photographs.
Yes, this is a fictional tale, but kids love to help. I see it in my son and I have seen it in other children of parents with or without scleroderma. The bottom line is no matter how sick we get, how crazy things seem to be and how much our kids complain about taking out the trash, they love us and they will help.
We need more stories like this to remind patients and their families that life does not end with a diagnosis of scleroderma. Raise awareness with this book. It’s about Scleroderma, and the very capable child in all of us.