Brittle Bones

[Coco9910]

Hi all,

I’ve already posted in children’s health, just trying to reach a wider audience.

My 2 year old has just been diagnosed with a brittle bone condition. They have sent her bloods off for genetic testing, but it’s a long wait for the results so she will begin treatment in the next few weeks, as she displays a number of brittle bone traits.

Just wondering if anyone has experienced similar or can point me in the right direction of any support groups, or forums where I can talk to people in similar positions.

I read your post earlier & was hoping someone with direct experience would respond, but they’ve not, & I didn’t want to leave you with nothing at all. I’m so sorry about your wee girl, that must be very stressful for you - I’m assuming the testing is to determine exactly which type of osteogenesis imperfecta she has?

The Brittle Bone Society is the UK OI Charity; & they’ve a presence across multiple social media channels that will let you connect with other people in a similar situation.

Strong Bones also support children with OI (& their families) - you will need a diagnosis letter to be able to join their Facebook group/forum, but you can call their advice line before that.

Unfortunately support groups for parents of disabled children generally need to be tightly locked down because there have been so many instances of people stealing photos of children & using them in online fundraisers; or “just” stealing medical information/descriptions of conditions to feign illness, induce illness, or simply claim it on social media.

I hope the results are as good as they can be & that you’re able to find some peer support.

@RosaMayBillinghurst thank you, really appreciate your reply! I plan on contacting the Brittle Bone Society to see if they have any support groups. I will join that Facebook group once I have some form of letter to confirm her diagnosis. Completely understand why they keep them so private!

You are very welcome: I’m just sorry I couldn’t offer more help @Coco9910

Hopefully BBS will have some kind of support group [for parents] & you could always contact Strong Bones to explain you’re waiting for results & see if they can offer any support while you are?

Good luck with everything 💐