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.
I was diagnosed with sjogren's about five years ago. Today as i enter my eighth decade my physical difficulties including a small stroke and a broken hip, Its been atrial to figure out what was really wrong with me and if it is treatable. A hint from a Urgent Care physician while I was on holiday sent me to the internet and then to this site Not long after that I made an appointment with a rumatologist who has been helpful. But it is here I turn most often checking to see if what I'm experiencing is in line with what others are experiencing. My fear(it's real) that I'm a hypochondriac old lady has been laid to rest. From this site I've learned how to consult with my doctor and how others have learned to alleviate or simply to live with their symptoms. It's been a source of real comfort. Thank you.
When I was first diagnosed with Sjogren's syndrome I was partly relieved that it had a name finally and petrified at the same time. I barely knew what it was and the internet alternately down played the symptoms or scared me even more. I did find other message boards before coming here and I almost didn't bother because the other ones were so cold. Posting a question was like writing it on a piece of paper and throwing it to the wind….maybe someone sees it, maybe not. I am so glad I took the chance one more time when I came there. I was so warmly welcomed I almost didn't know how to take it. Even the format here is different where the posts are all viewable and not separated into boxes with so much "stuff" its hard to find the message. Ben's friends is more than a message board, its a community. We care for each other, lift each other up when needed and give each other what we need to get through another day.