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Brittle Bone Disease Resources

Updated on October 7, 2014

Books, websites and resources for people with Osteogenesis Imperfecta

Brittle Bone disease (also known as Lobstein's Syndrome or Osteogenesis Imperfecta) is an very rare condition that causes extremely fragile bones due to a lack of collagen. Children born with Brittle Bone disease need a great deal of care, especially when very young.

I do not suffer from this disease, but I had to research available resources for a library assignment and I was horrified at how difficult it was to find anything, so have compiled this list of websites, forums, books and other resources for people needing information.

Image credit: Fotia Lago (by me)

Do you have OI?

Do you have Osteogenesis imperfecta?

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Further Medical Information

If you just need some reliable, comprehensive medical facts about OI

Living With OI: Guides to Management and Treatments - Nonfiction books offering practical medical advice

Books About Coping With Physical Disabilities - From teaching kids to getting a job, these more general guides address practical ways of coping with disabilitie

True Stories About Real People With OI - Autobiographies and nonfiction books about people growing up with brittle bone disease

  • The Hippo with Toothache is an adult nonfiction book about zoo vets and the animals they treated, including Kachina, a bear cub with brittle bones. It's not readily available (although my local library has it), so you'll have to check various sites.


The the other books below are straightforward autobiographies.

Brittle Bones, Stout Hearts And Minds: Adults  With Osteogenesis Imperfecta
Brittle Bones, Stout Hearts And Minds: Adults With Osteogenesis Imperfecta

Published in 2010, this book covers a comprehensive range of topics but is aimed at adults.

 
A Window On Eternity Abingdon Classic (Abingdon Classics)
A Window On Eternity Abingdon Classic (Abingdon Classics)

Retells the life of Jane Hess Merchant, a poet with OI

 
What Life Is Like Living with OI: Osteogenesis Imperfecta, Brittle Bones
What Life Is Like Living with OI: Osteogenesis Imperfecta, Brittle Bones

A self published (and therefore, badly in need of editing) book from an adult woman with OI

 

Brittle Bones in Fiction - Fictional books about people with brittle bones

A well researched and moving story about a family offered the chance to sue for wrongful birth of their daughter Willow.

In Handle with Care: A Novel, Jodi Picoult tells a story of a family with a daughter they love dearly - but who has OI, which places them in financial and emotional difficulties. They get the chance to sue for wrongful birth, which would provide them with the money to care for Willow - but also requires stating that they would have aborted her if they had the chance. Reviews are extremely divided, about half amazing and half terrible


Miles Vorkosigan is the hyperactive and brilliant star of Lois McMaster Bujold's amazing, clever and funny science fiction series. His parents were poisoned with a highly damaging gas while his mother was pregnant with him, leaving him with incredibly brittle bones and stunted growth. I love these books, and they are well worth reading in their own right.

Miles Errant is three books in one and a good place to start

Miles does not technically have Brittle Bone disease, but the effects were the same. Incredible fragile bones, endless operations, a dwarfish appearance - and rampant prejudice from a backward planet that feared mutations. His parents are marvelous, strong minded and supportive characters - but even they don't quite expect him to bounce off into the galaxy and start his own mercenary fleet... (sort of by accident).

Odd Thomas sees dead people, and this can cause a fair bit of trouble. In Forever Odd, a psychic suspense thriller, his best friend Danny Jessup, has been kidnapped and Danny's father murdered, as bait to capture Odd and his abilities. Another book with mixed reviews, the brittle bone connection is Danny, who suffers from OI.

Children's Books - Children's books about living with disabilities

Children's books are ideal for explaining to kids what's wrong with them, and how to understand their siblings or playmates. And simply being able to read about 'someone like you' is interesting, and helps with acceptance.

Unfortunately, there are no books for kids about OI, but there are several on other, or unspecified, disabilities, that affect people in similar ways (e.g. dwarfism, needing a wheelchair or crutches). These are some of the most appropriate books for children and teens.

bOIng! Kids are cool shirt
bOIng! Kids are cool shirt | Source

International Support Sites - Online websites and organisations helping people cope with OI

The websites that are still around are generally useful and run by other people who suffer from brittle bone disease. Most of them are old, out of date and less than pretty.

Many of them link to each other - as well as to just as many more sites that are dead, or covered in spam, or held by URL squatters. Do not trust the links on the pages of these sites - be careful and use some common sense.

One reason they are generally so bad is because brittle bone disease is so rare, most of the websites were created years ago and are generally run on love (with the exception of a couple of official organisations). And the low number of people affected means that the social sites aren't particularly active and may never achieve a critical mass big enough to keep it going. This is changing as more people can access the internet, though.

The sites below are the best - or the only ones still up!

Online Social Networks

Interact and contact other people who know about OI

Places to get in touch with other OI sufferers and family members online. These sites are mostly run by organisations found in the list of websites above. The ones below are still active.

© 2014 FlynntheCat1

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    • profile image

      anonymous 5 years ago

      what a great lens!

    • profile image

      Khaleeka 6 years ago

      A great and informative lens. You've been blessed!

    • Redneck Lady Luck profile image

      Lorelei Cohen 6 years ago from Canada

      It is sad that there are so many things can go wrong with the body. Thank you for highlighting the resources for this illness for those who may suffer from it.

    • CruiseReady profile image

      CruiseReady 6 years ago from East Central Florida

      Nice gathering of resources, and congrats on finishing the course!

    • PNWtravels profile image

      Vicki Green 6 years ago from Wandering the Pacific Northwest USA

      Great information and resources about OI. I have a friend who has it and also her son. Blessed by a Squid Angel.