[Sorry I had sent this out the first time using the wrong type of message format. This one let's you respond directly to the thread.]
Ben's Friends is made possible by generous donors who help pay for the costs of maintaining our network. They share with us, and we would like to share your story with them. Post what Ben's Friends has meant to you!
In your post, we'd love to hear a bit about your Ben's Friends story: how you were welcomed, what the support of your peers did for you, how Ben's Friends has made a difference in your life and your family's life, or how being here has changed how you cope with your rare disease. Or anything else you can think of!
It doesn’t have to be long. And if you’d rather share your story privately, send a PM to me, or to ModSupport (find them in the members section.) Would you rather do a video testimonial? Even better! Send a PM to ModSupport. They will tell you the easiest way to do one.
Is there anybody out there who would like to say something positive about this Ben's Friends support site? We'd love to hear something that we can share with the people who support us financially during the annual fundraising drive.
When my brother-in-law was diagnosed, my family was desperate to find anyone who knew what we were going through. When I joined this group, I was welcomed right away by more than one member. It was comforting to know that we weren’t alone. I know we have a long row to hoe, but I feel that this will be a wonderful resource now and in the future. We are thankful we found this group.
Hi Ben first of all thank you for this site. I got ADEM in 2000 when there were only 2 hits online. I have been afraid to share my story because I didn't want to create any fear in other's with ADEM. I have struggled for 15 years on my own without any local or online support. I have been in 17 hospital's, 4 rehab centres in four different cities. For the first 1 1/2 years I did not get the correct meds so by the time I got into a teaching Hospital I was paralysed, couldn't talk properly or see. . My kids and husband suffered immensely. I was so out of it for the first 8 years I didn't really get how devastating ADEM was. We had to sell our home, we both lost our jobs, moved 6 times in 7 years... exhausted our finances etc. It was bad and the toll it took on the kids was worse than I imagined. We are all struggling to create a more positive way of living. It seems though as the rest of the world moves on I am experiencing so many losses I don't know where to turn some days. Depression is my biggest problem along with pain and mobility. I am monitored every 6 months and pray there aren't any other problems. That's enough to share for one day so thanks again for letting me vent here.