Social media has been an extremely important tool for many people with disabilities to find others to get connected with. Sharing information (and having fun) is important for people with disabilities, especially if it’s a rare disability like Osteogenesis Imperfecta–or Brittle Bone Disease.
A few years ago, after going through my own physical transformation, I started to get curious about my disability and I wanted to share my experience with others. As someone who has Type 1 O.I., Facebook became a place to find others who were also living and thriving in life with O.I. and I wanted to connect with as many people as possible. This was also because I had only known one other person in my life who had O.I., so to start connecting with so many folks was awesome.
Once I started to meet more and more people with O.I. and get into conversations with them in other groups, I realized that the topic of fitness, exercise, nutrition, and wellbeing wasn’t really being discussed at a level that I felt was important for us. There wasn’t a focused discussion and I wanted to create that for us.
So I started a group on Facebook and called it, Health & Fitness for O.I. The group HAS BEEN AMAZING! At the writing of this post, we have well over 1,100 members and it grows each day. There are so many people with brittle bones that are curious about how to work with their bodies to get stronger and live longer, and they want to do it in a positive, supportive, and encouraging environment. And that’s what this group is all about!
I’ve recently changed the name of the group to Fitness, Nutrition, and Wellness for O.I. as I feel it’s more appropriate to the three aspects of healthy living that we need to focus on.
Come and join us: http://bit.ly/fitnessnutritionwellnessoi
I look forward to seeing you there!