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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

An Open Letter about Harlequin Ichthyosis

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.

Rachel

13 comments to An Open Letter about Harlequin Ichthyosis

  • Jeffery

    Well written Rachel (and Jennifer), I only hope that Harriet turns this into a learning experience. If she does read it, take it in and learn from it, then there is no reason why she can’t become an excellent medical practitioner.

  • Les

    I agree Rachel, you wrote a very eloquent response that needed to be said. I hope your words will touch a part of her thought process to reach the compassionate and empathetic side of her feelings.

  • Peggy

    Nicely written Rachel: as someone with icthyosis and two children with icthyosis I would like to add that her use of the word “disgusting” I think reflects a lack of education. Kind of like when you are at the grocery store with your young kid and someone says in front of your child, “why does she look like that” and you say “he has a form of icthyosis” and they say “that’s a shame”. What they don’t get is that if you are born with a genetic condition, that’s your normal. You don’t really feel bad about ourselves…that is imposed by people from the outside making judgments based on their normal. Its not like we could see and suddenly went blind. Thats tragic. A person who is born blind does not feel “tragic”. Reminds me of a law school roommate of mine whose back would go into severe spasms any random moments and writhe in agony until someone could administer a uber-pain medication. We talked about it and I wouldn’t trade my icthyosis for her condition and she wouldn’t trade hers for mine. We all think what someone else deals with is worse than what we deal with, because we know we can handle ours. So instead of writing about medical conditions as “disgusting”, harriett might say “challenging”. I hope they teach doctor/patient communication skills in medical school and that this kid just hasn’t got to that course yet.

  • Peggy Neilsen

    Thank You so much Rachel & Jennifer for writing such an inspiring article that I pray reaches out to millions more here on the Internet. I truly believe that people in the world today that’s never been affected or had a loved one affected with Ichthyosis have no idea of what we, and or our children who are affected go through on a daily basis. I wished that before Harriet had written her article she would have taken just a day to live in the shoes of those who are affected. I believe then she would have seen the Inner Beauty of each and every one, and would have made a better choice of the words she to describe them.

  • George A

    Though it’s impossible to disagree with any of the commentary on how the use of the word ‘disgusting’ is inappropriate, I think the tone of some of the response was a little unfair towards the end, though it’s commendably balanced otherwise.

    I’m not defending the article title; I’d say that needs to be changed. The inclusion of that word alone brings the tone of the article down, from medically informative to twisted entertainment. I’m saying that some of the comments made in the article against Harriet are a little vicious; suggesting a lack of understanding would be understandable, but suggesting a lack of empathy seems a bit far… It seems a little counter productive for someone with intent to become a doctor to be deliberately calling people ‘disgusting’, which I don’t think is the intent. The condition itself was referred to, not an individual, which (though still insensitive) is a marked difference I think. Anyway, just in defence of Harriet – no harm intended I’m sure! :)

    George

  • Hi Rachel,

    I am Marco, project manager of The MedSchool Project. I would first like to commend you for speaking up about the matter – you have represented many unheard voices in the ichthyosis community.

    I reiterate a comment above, the title was not intended to call any individuals ‘disgusting’ but it is clear that it is not appropriate. On behalf of Harriet and of the MedSchool Project team, I offer my sincere apologies and have made due changes due to the blog titles.

    Please free to email me for any further discussion on marco@themedschoolproject.com

    Marco

  • Matt Huckle

    Hi there,
    I am an avid reader of medical articles written by The MedSchool Project crew. I feel unfortunate that I came to read your letter about the offending article before reading Harriet’s article myself. Before anyone else makes judgement on her, I plead that people read the offending article itself, here=”http://www.themedschoolproject.com/2012/09/rare-and-disgusting-diseases-week-four_9.html”. I feel that the article is a brilliant and unbiased look at the condition itself. The term, ‘disgusting’, was used once in the title, and never in the article itself. I feel ashamed that there are people in the world who would slander an intelligent and mature student just because of one word, which appears to be taken straight out of context. There are sites out there with very offensive and upsetting content which do require negative press, but the attention that this article has received is not needed. I do empathise with you, but I don’t believe that Harriet deserves this. You stressed that you were called disgusting, and your sons were called disgusting, but I don’t agree with that at all. The title was ‘Rare and Disgusting Diseases’, and the article even began with a description of how rare Ichthyosis is, with no mention of the term ‘disgusting’. Your article brought up the illusion that the blog on Ichthyosis was an attack on the people with the disease, which I find very misleading. I hope that I haven’t offended you or anyone else who took offence to the article.
    Thank you,
    Matt.

  • Alicia

    My son has HI but it doesn’t matter what type of ichthyosis but wow, “disgusting”? That’s very sad. In no way shape or form do I feel embarrased about my son. He is my joy, pride, all the good things :) & I don’t really mind if people understand or not. Let them live their ignorant lives & we will live our lives with our special children.

  • jennifer

    Marco, we commend you for taking action. The difficult part, as we said, is that the post itself is fairly innocuous, but the title was the true source of the problem. Thank you for correcting it. We know you didn’t mean to be offensive, and we are glad that you saw it from our point of view.

  • jennifer

    The point is that no doctor should be calling their patients names, even in the title. HI is NOT disgusting, and neither are the other articles with the title. This is not slander against Harriet, this is pointing out that her well-intentioned article included a fatal flaw that can be very hurtful to people actually affected by these disorders.

  • rachel

    Marco, thanks for changing the title.

    As I tried to express in my original post, I felt that while I am able to ignore ignorant or hurtful attitudes on comments to Youtube videos or on random discussion boards on the Internet, someone aspiring to become a doctor — and writing from a position of knowledge and authority — should be held to a higher standard.

    Jennifer and I went back-and-forth over whether to bring this issue up via private feedback, and the two biggest factors influencing our decision to start this dialog and calling out the author by name publicly were:

    1. The article on harlequin ichthyosis was the fourth in a series of “rare and disgusting” disorders. So we were highly confident this wasn’t a case of an editor exceeding the author’s intent. Even if that happened the first time, by the fourth article the author would have known.

    2. The article names affected individuals and uses their photographs. The photographs are appropriated from public sources (including but not limited to mainstream media articles about HunteR). It’s no secret that Hunter is affected with harlequin ichthyosis (and is a passionate advocate for others), but to what extent did the article intrude upon her privacy interests? I felt that since The Medschoolproject didn’t reach out to Hunter before writing about her (and using her picture in this context), I had no quealms about starting this discussion publicly.

    Finally, I believe that this (public) discussion is useful on multiple levels. The patient perspective is very often given very little attention in medical publications. I stand by my opinion, that it appears that the author and the editors involved didn’t consider the perspective of those affected by the conditions being written about, and that reflects poorly on them.

    This is very much an important issue for people affected by ichthyosis, because parents and caregivers looking for information online are very likely to first find information written for a lay audience (such as The Medschoolproject), as opposed to peer-reviewed scientific journal articles.

  • Laurie

    Thank you for this article and your efforts. In 2010, I wrote to a journalist for the Philadelphia Inquirer, taking issue with a title to an article she put her name on, wherein she referred to ichthyosis (all of ichthyosis presumably) as “fatal”. I tried to tell her so much of what you have said here. She was infuriated and wrote a scathing response to my mother in law, who also wrote to her. She declared that the article was “the last article” she would ever write about ichthyosis. It is nice to see a better result from your efforts to effectuate change.

  • CNic

    Marco, I notice from searching on the medschool project website that the title of the article has been changed to ‘rare diseases’, which is good, but there are links at the bottom to the previous title. Is it possible to have that changed also?
    Thanks

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