I just want to say thank you for this group. It has been so wonderful to have a place to come. Where I knew I was not nuts, & where I knew others understood EXACTLY what I was feeling. A place where I could come for advice and support. You guys are the best
I'm incredibly thankful for this group as well!
Thanks, Elizabeth, for this posting. It's something we've been thinking about. Facebook groups are good, but we feel we have something special here. As part of a larger network of rare disease communities, http://www.BensFriends.org, we are able to offer more services such as:
1. access to free legal help
2. access to free or discounted medical advice/information
3. programs to help people raise funds for their favorite charities
4. patient guides written as e-books
What else could we do to help our members with their medical condition and their lives? We love new ideas.
I have been blessed by this group too. I feel not so alone and I feel understood. Thanks for the post...but I secretly do have fun on FB :)
agreed!!!!!!!!!!!! its nice to know that you can say feel or think anything and its all OK!!!!!!
I love FB because I can keep up with distant family and friends. BUT this is the place where I feel comfortable about myself because the ones on FB do not understand me like all of the members here. Yes, it is great to have a place to come where you know people don't think you are nuts!
Wow, Elizabeth, well said! And it IS nice to know you aren't nuts, others can relate, and those others are also compassionate people That's a great gift.
And you have really helped to lift my spirits, along with Scott. I really felt good getting your messages.
I look forward to interacting with everyone here and hope we can all make this situation easier for all through friendship and support.
Thanks Elizabeth! you made my day!
I agree, this place makes me feel "normal" (whatever that is).