Tuesday, March 29, 2011

What's So Funny 'Bout Peace, Love and Understanding?


As I walk through 

This wicked world 

Searchin' for light in the darkness of insanity.
I ask myself

Is all hope lost? 

Is there only pain and hatred, and misery?

And each time I feel like this inside

There's one thing I wanna know
What's so funny 'bout peace, love and understanding?
What's so funny 'bout peace, love and understanding?

I believe in the power of the written word.  At best words can increase understanding, offer enlightenment, and in some cases even bring healing.  An increased understanding of Pompe Disease was my hope when Dr. Lisa Sanders first contacted us.  I did not expect to also experience peace in my heart and love from strangers, but as usual Pompe always throws us a twist. 

A few months ago, Donna received a call from Dr. Rand at CHOP asking if we would be willing to share Maddie's story.  She explained that there was this interesting writer for the New York Times who pens a column about medical mysteries and is also the technical advisor for the TV show House.  Dr. Rand said she never misses her columns and thought for sure that Maddie’s story would be perfect.  After speaking with a few friends and investigating Dr. Sanders' work, we responded with a resounding yes.  The New York Times?  What a great opportunity to spread the word about Pompe!   

Dr. Rand sent off a note and a few days later Dr. Sanders contacted us. She explained that for many years she has written an article for the NYT Magazine where she defined a condition, outlined the diagnosis process and defined the disease.  To mix things up, she planned to start a new online contest where the readers would have the opportunity to solve a medical puzzle with limited clues, just like on the show House.  Whoever made the correct diagnosis would receive a signed copy of her book and more importantly the satisfaction of cracking the case.  She loved the idea of starting off this new endeavor with Maddie's case, as the process from hair loss to Pompe was truly unique.  Following the blog, Maddie's full story would be written up in the NYT Sunday Magazine.  

After signature of a few privacy forms, we were on our way.  Dr. Sanders reached out to our local pediatrician, the liver specialist and muscular neurologist at CHOP, and little old us.  Each was invited to tell their part of the diagnosis process from the day we walked into All Star Pediatrics until today.  Over a few weeks, the writer called the medical team, received medical reports, test results and completed her own research into Pompe.  Eventually, she took the train from NYC to our door with pen in hand ready to meet Maddie and Emma.  We spent two hours carefully reviewing our version of the story, our emotional journey, our laughs, our family’s strength, and our hopes for the future.  From our initial discussion until the end we could see that she truly cared about patients and approached her work in a careful and peaceful way.  We were left feeling like we had shared the afternoon with a good friend. 

The story hit the New York Times blog on March 23rd and took off faster than any of us expected. Here was the first post. 

Think Like a Doctor (The Contest)

In a matter of hours, the contest had gathered nearly 1400 responses from around the world.  There were established doctors, med students, and plenty of regular Joes (and Janes) asking questions and posting solutions as they raced against the clock to find the diagnosis.  The initial answers seemed quite serious. Some said she had dermatomyositis, another said juvenile polymyositis, one person guessed hereditary hemochromatosis, and many said sarcoidosis.  Don’t ask me what any of these are, but they all sound like good guesses.  And then came the funny ones.  These solutions stated the trouble was excessive violin practice, that she offended witches, that she was the victim of a mysterious poisoning plot, and that she was an alien preparing to morph in 2012.  That was my favorite.
 
By noon the next day, Dr. Sanders posted the answer and congratulated the winners.

Think Like a Doctor (The Winner)

While some responded with appreciation for the answer, others came with a bit stronger response.  I termed these “the haters”.  The first was “Is her mom a helicopter parent who has simply worn down her child into a joyless nub?”  Then came complaints about an obsessive mother spending her medical insurance to research a hair loss emergency while poor kids in Philly stacked up at clinics.  Others wondered how attentive parents could miss noticing a daughter who couldn’t do sit-ups or one who could not lift a milk carton.  The prize went to someone who, upon learning the cost of Lumizyme treatments, asked “which life is worth $300,000 per year?”  Charming.

While I was a bit ticked off by these comments at first, I quickly shrugged them off after reading post after post from people who we had never met expressing their concern, wishing us the best, and passing on their love for a little girl who’s hair loss lead her and her sister down the road to Pompe.  Like so many times before, we were overcome by two simple things that made the whole process worthwhile, support and love.   
   
So I want to send a big thanks to Dr. Rand for suggesting this to us and to Dr. Sanders for writing a great piece which riveted so many and brought worldwide visibility and understanding.  We fully enjoyed the process and can’t wait for the magazine article on April 10th.

So you tell me…
What's so funny 'bout peace, love and understanding?

Credit to: Elvis Costello, "(What's So Funny 'Bout) Peace, Love And Understanding"