Brittle Bone Disease Resources
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?
Further Medical Information
If you just need some reliable, comprehensive medical facts about OI
- GeneReview/NCBI/NIH/UW entry on Osteogenesis Imperfecta
- Official medical information from the University of Washington, Seattle. The terminology may not be entirely accessible, but it is extensive and reliable and it also cites a long list of scientific studies.
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.
Published in 2010, this book covers a comprehensive range of topics but is aimed at adults.
Retells the life of Jane Hess Merchant, a poet with OI
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 , 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 Handle with Care: A Novel
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 , 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. Forever Odd
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.
Personal Websites: Real Stories From OI Familes - Individual websites run by parents of OI children
- Baby Jonathan's OI Page
For info on infants and children with Osteogenesis Imperfecta Personal story of raising a child with OI. Advice for raising newborns and young children from personal experience Part of the OI Parents Email List (over 650 parents of children with OI
- Simon Illa
Homepage of Simon Illa, a successful music producer with Osteogenesis Imperfecta. Read all about him in this article:
- Osteognesis imperfecta
Pagina en espanol sobre osteogenesis imperfecta, tambien conocida como la enfermedad de los huesos de cristal Run by Maria Barbero about her son Paul In Spanish, can be translated with Google Translate
- Osteogenesis Imperfecta Type 1:Jojo Sturm's Story
Osteogenesis Imperfecta Type 1: Jojo's Story (Please note: this was written in 1995--an update follows.)Jojo is four years old. He has type 1 OI, and has had about 25 fractures. Most of them have been to to his femurs and tibias, but he's also broken
- Marie Holm Laursen
Marie Holm Laursen - www.marie-med-oi.dk About a girl with OI, born in 1997 in Danish, can be translated with Google Translate
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!
- Children's Brittle Bone Foundation
US based charity that is fairly active in funding and awareness. Aimed at raising awareness and promoting research. Very little useful information on the site, but provides a good list of further websites.
- Osteogenesis Imperfecta Federation Europe
Offers a wide choice of languages. Support, information, forums and links to more sites
- The Brittle Bone Society - Welcome to the Brittle Bone Society
The Brittle Bone Society is a UK charity providing support to people affected by the rare genetic bone condition Osteogenesis Imperfecta. Long running UK based charity Includes resources, forums and advice, as well as examples of real people.
- Osteogenesis Imperfecta Foundation
A major international support society from the US. The 'myths about OI' page may be useful when explaining to other people and is accessible and comprehensive.
- Osteogenesis Imperfecta - NIH Osteoporosis and Related Bone Diseases National Resource Center
Resources for patients and medical professionals on osteogenesis imperfecta and how it affects other diseases from NIH Osteoporosis and Related Bone Diseases National Resource Center. General FAQs and specific medical information USA based
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