MPS/ML Bookshelf

Posted Tuesday May 08, 2012 by Melissa

You may have noticed that rare disease finds its way into books, and on television and movies here and there. There’s nothing more popular for rare disease geeks than House, M.D. or Mystery Diagnosis. But where else can we find in-depth pictures of what it’s like to have a rare disease?

What books or movies might we or others be interested in that relate to rare disease?

I decided that I would try to compile the best list I could find of books and movies that:

  • portray MPS/ML or closely related diseases,
  • were written by MPS/ML family members or patients themselves about their experiences (my disclosure is that one of these books is mine),
  • discuss the genetic background of MPS/ML conditions,
  • discuss other topics that might be useful to MPS/ML families, like special education issues.

So I’ve collected these on an Amazon widget below. In addition, I know of the following ones that were not available on Amazon:

  • The Strange Tale of Ben Beesley, a book written by Matt McNeil for his children Waverly and Oliver with MPS III
  • My Rare Story, a video by Mekenzie Mattheson in connection with his storybook entitled Our Different Vacation.
  • Henry the Duck, a video by Harly in connection with her book of the same name.

I know of a few more currently being written as well. Of course, I should warn you that given the emotional connection, some of these might be difficult to read or watch.

I’ve also collected the list and will continue to update it on a Pinterest board called MPS/ML Bookshelf – follow and stay updated! Also, please comment with any additional suggestions!

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7 Responses to “MPS/ML Bookshelf”

  1. I have written a book about my life and how I have overcome many obstacles while living life with MPS Type VI! The motto I live my life by is “When Life Hands You Lemons…Make the Best Lemonade Possible!”

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    • Thanks Kendra! Could you post where your book is available so others can find it? I’ll also add it to the Pinterest board.

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  2. Terri Klein // May 8, 2012 at 10:49 am

    Melissa, I want to share with you Kelley’s Journey, written by Denise Crompton. This is the extraordinary story of a family being a family while in the midst of determining a diagnosis for their daughter Kelley with Mucolipidosis Type III – Pseudo-hurler polydystrophy. (1963-2009) The author, Denise Crompton is currently writing the second follow up story. An extraordinary journey in the life of Kelley Crompton.

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    • Got it on there from Amazon! I hope these links are helpful for families for support, education, and awareness!

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  3. The Cure by Geeta Anand (the best ive read)
    John Crowley’s book also based on his family and Pompe disease

    http://www.amazon.com/Diseases-Twenty-First-Century-Medical-Library/dp/0761319190/ref=sr_1_1?s=books&ie=UTF8&qid=1336621412&sr=1-1

    Rare Diseases and Orphan Products: Accelerating Research and Development [Paperback]

    Uncommon Challenges; Shared Journeys: Stories of Love, Hope, and Community by Rare Disease Caregivers [Paperback]

    Living Well With Mitochondrial Disease: A Handbook for Patients, Parents, and Families by Cristy Balcells

    http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Dstripbooks&field-keywords=rare+disease#/ref=sr_pg_5?rh=n%3A283155%2Ck%3Arare+disease&page=5&keywords=rare+disease&ie=UTF8&qid=1336621644

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  4. Kendra Gottsleben // July 31, 2012 at 11:41 am

    Yes, here is the link to my online storehttp://kenimagine.storenvy.com/products/318712-live-laugh-lemonade-a-journey-of-choosing-to-beat-the-odds

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