HWN Suggests

Growing Up Fragile

One morning this summer when I was bored and new to the website Reddit, I decided to do an AMA, which means “ask me anything.” The AMA was about my life and growing up with something called Oseogenesis Imperfecta (also know as brittle bone disease) and about having broken around 400 bones in my 18 years of living.

I got some really good questions, and of course — since this is the Internet — some not so good ones as well, which I knew would happen. I answered as many questions as possible that day. The next day I spoke to an associate editor about sharing my story on HuffPost Teen. So here it is — my story about growing up in a world where sneezing could break a rib or spraying a can…

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Articles of Interest

Actor Atticus Shaffer May Have Fragile Bones, But He’s Got a Strong Love for Life

Atticus Shaffer doesn’t let Osteogenesis Imperfecta type IV stop him from doing what he loves.

Watch these rare disease sufferers meet for the first time

“Two in a Million,” - the six-part series connects two people who share the same medical condition, introducing them to perhaps the only person who can truly understand the pain, struggles and isolation of their everyday lives. They spend one week together, traveling to meet a doctor and inspiring each other to try new things like visiting a big city, learning to drive in a specially designed vehicle, taking part in team sports, or preparing for their first job interview.

Resources

Brittle Bone News

Molly was born on 1/13/06 with Type III Osteogenesis Imperfecta (Brittle Bone Disorder). I have created this blog to share our ups and downs with friends, family, and others in a similar situation.

Brittle Bone Society

The Brittle Bone Society is the sole organisation set up to address the needs of people born with Osteogenesis Imperfecta (OI) in the UK and Republic of Ireland. Our charity wants a world in which the needs of people in the UK and the Republic of Ireland living with Osteogenesis Imperfecta are understood, respected and fully met.

No Hands But Ours

At this time, there is no cure. The prognosis for a person with OI varies greatly depending on the number and severity of symptoms. Life expectancy is not affected in people with mild or moderate symptoms, it may however, be shortened for those with more severe symptoms.

Osteogenesis Imperfecta Foundation

The Foundation strives to build public awareness and generate additional support among individuals, community organizations, public agencies, and medical professionals. Up-to-date information on OI-- from medical issues to daily living strategies-- is available via phone, Internet, fax, and mail.

Wishbone Day

Wishbone Day is an international community awareness effort for Osteogenesis Imperfecta (OI), also known as 'brittle bones'. Wishbone Day is officially celebrated on the 6th May each year.

Living with Osteogenesis Imperfecta

Personal experiences from a family raising an OI child.