Wednesday, May 9, 2012

This week I have been trying to find some support/chat groups that are for parents and individuals that knows someone or has Osteogenesis Imperfecta. I had no luck finding any type of support groups that were previously updated or that has continuous chat from this year. I was looking for a group that I could find additional questions that deal with Osteogenesis Imperfecta so I could possibly find an answer or two to a question that I found myself asking about the disease. While looking through several pages I came across one website that contains support groups for families or individuals that suffer from Osteogenesis Imperfecta. This website separated contact information for local support groups by state and even by regions within the state. The website information is: http://www.oif.org/site/PageServer?pagename=SN_FindGroup. While also looking on this website I found that there were some support groups on facebook s well. Since I have a facebook account I decided to go see if I could find any type of support groups. I found several groups they only contained people that "liked" the groups; there was no actual conversations being held in these groups. I was adamant about trying to find a current group that not only contained people that "like" the group that a group that also contained people having conversations about Osteogenesis Imperfecta or about their daily lives. I came across a group titled "Osteogenesis Imperfecta Community Chat". There are only 49 people that "like" this page and the recent posts on there no one is responding too what anyone says. Back in 2011 there were a couple of posts and chats about depression and OI that sparked a conversation but that's about it. Hopefully once I continue my quest again I will be able to contact or find some support or chat groups of individuals with OI.

2 comments:

  1. Rebecca,
    I think support groups are always important. It is sad to hear that you weren't finding any. I did a little research and I found a few, but I am not sure how reliable they were. Is there anyone you know who has OI or family memeber? That may be a good resource to get information from. Also I am sure there are support groups out there that aren't specific to people with OI or families, but just for families who have children with disabilities which I'm sure would be great! Hope this helps!

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  2. I know two individuals that have OI but I'm not sure that their mother will let me do an interview with them.

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