To the website that wrote about Harlequin Ichthyosis:
A couple of days ago, I became aware of your website via my now-regular Google searches related to ichthyosis. Reading through your articles, I commend you on your initiative in writing about health and medicine. In your biography you say, “Throughout my life I have been given lots of medical care and support” and that you want to study medicine “so that [you] can feel like [you are] giving something back to the world, i.e. help others as others have helped [you].” I feel like this is an admirable sentiment.
However, I take extreme exception to the title of your article from September 9, 2012, “Rare and Disgusting Diseases: Week Four – Harlequin Ichthyosis”.
Let me be clear. I have a severe form of ichthyosis, as do my three sons. My spouse Jennifer and I are all-too-aware that ichthoysis is a disorder that tends to attract gapers – both in person and on the Internet.
I am fortunate that many people I meet casually on a daily basis won’t notice that I have ichthoysis, but it is still a major factor in my life. Others, especially those with autosomal recessive congenital ichthyosis (ARCI), are not so fortunate. We all know we attract attention, but none have it harder than those with harlequin ichthyosis, the most severe form of ARCI.
We’re resigned to ignoring ignorant trolls from the darker corners of the internet. A few weeks ago, our friend in Australia ran into this problem. YouTube videos of babies with ichthoysis are full of negative comments, including, memorably from a few years ago, an ignorant chorus of “kill it with fire”. (No, seriously. I’m not linking to those comments but they’re there.)
More frustrating, however, are our so-called allies who learn a little about ichthyosis, post about what they learned, and then describe the red skin or ectropion or other symptoms as “evil,” “disgusting,” devilish” or suggest that we or our children should have been put out of our misery at birth. We’ve heard it all.
Harriet, the title of your post about harlequin icthyosis calls it “rare and disgusting”. And you’ve used in your post four pictures of our friend, Hunter. She is a beautiful and strong young woman, and Jennifer and I are honored that she is our friend. Let’s be perfectly clear. You called our friend disgusting. I have a related disorder. You called me disgusting and you called my sons disgusting. Sure, you praised Hunter for “coping well”, but first you called her disgusting.
Ignorant comments from the darker corners of the Internet are par for the course. But we are much more saddened by ignorant comments from those who write from a position of authority, or who aspire to those positions.
Picture this scenario: a parent has a newborn baby affected with a severe form of ichthyosis. (Many doctors already tell new parents in this situation to stay away from searching the Internet.) And late at night, after coming home from a long day spent hovering around the NICU, wondering if their baby will survive at all, and wondering what kind of life she’ll lead, that parent searches the ‘net and finds…your article. Congratulations, you’ve just called that parent’s baby “disgusting”.
Or another scenario: A young child with ichthyosis is regularly made fun of by his classmates in school. Maybe they refuse to hold his hand because it feels strange. Or they think he smells funny. He asks his parents about his skin, and they turn to where people normally turn these days for information: the Internet. And they find your article. I wonder what that conversation would be like?
Hunter doesn’t need us to defend her. But you should know that she has inspired many kids affected with ichthyosis and their parents. She has made herself available as a role model for parents of babies with Harlequin ichthyosis, and to others.
Hunter has something very important: empathy. Can you say the same? When you wrote about harlequin ichthyosis (or when your colleagues edited or approved your post), did you or they even consider about how the words you chose for the title of your post might be regarded by people affected with ichthyosis? Or the other “rare and disgusting” disorders you’ve already written about?
What you wrote earlier this month might live on indefinitely in the archives of the ‘net. I believe that the callous way you’ve referred to people affected with harlequin ichthyosis reflects very poorly on your own empathy and your judgment. Because of what you’ve written, I started questioning your ability in the future to provide compassionate medical care. I urge you to consider how your article about harlequin ichthyosis and the words you’ve chosen reflect back on you and your colleagues.