My Daughter’s Disease is Not Useless Information

Recently a family in the cystinosis community made a shocking and upsetting discovery this past week in something that I’m assuming was meant to be a light hearted gift. We’ve all seen those bathroom books before, usually full of strange, little known facts meant to elicit a few chuckles. So when I saw a picture of the cover of a book entitled “The Indispensable Book of Useless Information: Just When You Thought It Couldn’t Get Any More Useless–It Does“ I didn’t think too much of it. Until I saw the second picture and there underneath the “Mystery Diagnosis” section was this:

To say that I (along with plenty of other parents) was outraged is an understatement. How dare they have an entire section about rare diseases in a book with “Useless Information” in the title. And do you know what the tag line for this book is? “Nothing you’ll ever need to know is in this book“. Are you kidding me?! Try telling that to the families out there who spent months in and out of the hospital, praying that the doctors would finally discover what was making their baby so ill. Or organizations like the Cystinosis Research Network who send volunteers to medical conferences around the world to help spread awareness. Or the doctors and researchers who’ve dedicated their careers to understanding cystinosis, creating better treatments and searching for a cure. And how about you tell that to the friends and family members who’ve lost their loved ones to this disease.

What I find the most appalling is the amount of people this book would have gone through before it went to print. From the author to the editor to the publisher, the level of ignorance here is outrageous. Did no one think that perhaps including rare diseases in this “useless” book would be insensitive and downright insulting to those suffering from said diseases? Or did they think that we were so few in number that our feelings weren’t worth being spared? Either way I don’t care for the answer and what it says about our society in general.

Then sometimes I think that maybe I’m over reacting. Having information about cystinosis included in a New York Times Bestselling book series is actually helping to spread awareness to people who may not have heard about it otherwise. And in the end isn’t that really the goal (aside from a cure of course)? But then I think about stories I’ve heard from people in the community. Like the server who lectured a mother about giving her son too much salt, or the woman who questioned a father about whether cystinosis was even a real disease or if he was just trying to run a con, or the doctor who prescribed a lethal dose of medication to a woman with cystinosis because he didn’t bother to check if it was contraindicative to her other medications. These incidents happened because those people felt the same as this book. Cystinosis knowledge is useless.

Obviously this couldn’t be further from the truth for my family. We were lucky to have my daughter diagnosed in less than 3 months and with no hospital stays. This was largely in part because the nephrologist that helped diagnose her is on the Cystinosis Research Foundation’s scientific review board. Without her prior knowledge of cystinosis it could have taken much longer to realize that the electrolytes my daughter was losing in her urine was due to Fanconi’s Syndrome which was caused by cystinosis. Her growth would have been delayed for even longer, she could have developed rickets like so many others do, and without starting her medication ASAP the cystine would have accumulated further, causing even more damage to all of her organs. It even states in this book of usless information that “if left untreated, those afflicted will die of kidney failure,” so please explain to me how this information could be viewed as useless. This information is saving lives!

Our family doctor had never heard of cystinosis before, though he has been great in educating himself, and you can forget about a walk in clinic doctor having any prior knowledge. This leaves us feeling like we can’t rely on any medical professionals except those at the children’s hospital. When my daughter was sick in January we brought her into the ER at the children’s hospital instead of a hospital right by our house because we wanted to ensure we were going to a hospital that had at least a few doctors who’d heard of the disease within it’s walls. Without any prior knowledge of cystinosis how can we be sure our daughter is receiving the best medical care?

Everyone would be a better person if they were better educated on the many types of diseases that are out there and the struggles these families go through. A little bit of empathy and understanding goes a long way in helping us feel like we’re not so all alone and our mission to spread awareness is not in vain. So when a group of people come along and include my daughter’s rare disease in a collection of supposedly useless facts my mama bear claws come out. If you feel the same as me maybe drop by the publisher’s, Perigee Books, Facebook page and let them know. Perhaps we can help a few more people understand how insensitive they’ve been.

Update: July 1, 2014: I posted a comment on Perigee Books Facebook page with a link to this post and here is their response.

“Dear Amanda: We truly apologize for any offense.This series of books is meant to be tongue-in-cheek trivia, and as such, they cover a wide breadth of topics with an intended lighthearted touch. We as the publishers do not mean in any way to trivialize any disease, and we are very sorry to have made you feel as such. Thank you for reaching-out, and we wish you and your family all the very best.”