Great support site for Mast Cell Disorders and MCAD.
The site in most cases would appear to be very supportive, unfortunately some of the moderators in the group are abusive at times. Imagine coming to a group for support and being abused by the ones you expected support from. It was the behavior of a few that was enough to encourage me to leave the page and find support somewhere else.
My quality of life has improved immensely from the information, tips and support I have received from other Psoriatic Arthritis (PsA) patients. Tips from other PsA patients have helped me reduce pain without drugs, provided me a guide on how to talk to my doctor about my debilitating fatigue and cheered me up when I was feeling very, very low. As a result, I don't need pain meds often, I got a prescription to help with my fatigue - yay !!! and I'm feeling very optimistic about my future.
Thank you Ben's Friends - without you I'd be alone, too tired to do anything and depressed.
I recently discovered this website and have found it to be extremely helpful. I encourage anyone who is dealing with this disease to visit it....many helpful tips and inspiration people.
I have Psoriasis and Psoriatic Arthritis.....If I hadn't found the loving support and knowledge from LWPA I don't know what I would have done! They are a God send!!
If it wasn't for The Generosity and Kindness of LWPSA I dont know where I would have turned. They were an Awesome Support System When I Got My Diagnoses. So Greatful I Found this Site. Keep Up the Great Work !!
I was diagnosed with Eagle Syndrome at the end of summer 2014 and could find very little information about it on the internet or from the doctor who diagnosed me. In my search for knowledge, I came across the Ben's Friends website. WOW! Suddenly a whole new world of information about ES was opened to me through the posts of people who shared my ailment. This site has been amazingly helpful, and the people who respond to my posts are so very supportive and encouraging. I am now in a position to offer advice and encouragement myself. I have made some good “eFriends” here as well and am so thankful for the love and support I receive from them through emails, posts, and prayers
I am amazed at how great I feel when I read posts about subjects that I've had problems with or topics I've wondered about but didn't have anyone I could talk to who would understand. This site is wonderful. I love the support and warmth I feel when reading posts from others and also when I start a thread myself. The answers are always supportive and frequently helpful. This site feels like home to me
This is the best site for people with an AVM. if you need information or support, check out avmsurvivors.org. It's just one of many rare conditions Ben's Friends supports. Thanks Ben's Friends!!
After I was diagnosed with Fibromyalgia, I needed to understand how my life would change. I searched for information online, only to find out that my disorder was rare and incurable. That frightened me. I knew I needed to connect with other Fibromyalgia patients for support. The one online support group that really stood out was Ben's Friends' Living With Fibro. I could see just how special this community was from reading only a few discussions. I decided to join, and in the few years I have been a member, it has come to mean so much to me. I know I can always come to the site for the latest evidence-based information on my disorder and to just find a place where I will be understood by other Fibromyalgia patients. Ben's Friends is where I turn to for a positive exchange of emotional support and coping strategies for living my best with this disorder.
I am a volunteer moderator on the site now, and I have made friendships there that I know will last a lifetime. There is no rare disease patient support network as exceptional as Ben's Friends. Thank you, Ben's Friends, for all you have done for me.
I joined AVM Survivors (Arteriovenous Malformation) shortly after I had my surgery and it was the best thing I ever did, especially in the days of my healing. The site was such a godsend to me, with so many groups, discussions, new friendships and a place where people actually understood what I was going through emotionally and physically. After my recovery was over, I decided to become a Volunteer/Moderator on the site and give back to the community that helped me so much. Anyone diagnosed with a rare disease, MUST check out Ben's Friends and become a part of that patient community :).
I found Ben's Friends to be a gold mine! After I was diagnosed with a rare disease, I felt like I had no one to talk to about it because no one else had ever heard of it before. Then I found Ben's Friends and now I can talk to many people all over the world who have also been diagnosed with this same disease or are friends or family members of patients diagnosed with this. I found that extremely helpful. Also, I was able to find a doctor in my area who has treated this condition before. How fantastic is that!? Thank you to Ben and everyone who has made this site possible!!!!
I found Ben's Friends after my doctor recommend I find a support group for Lupus. After a couple of years and great support and information I became a moderator. I have found friendship and valuable information. This is a great place for people who are at home or in the work force. Their is information for every one.
I am a member of the Ben's Friends Fibromyalgia support community. When I was first diagnosed with Fibromyalgia, the primary supports I had in my life were my mom and husband. Although they are very supportive, I needed a place where I could go and connect with other individuals experiencing the same struggles, trials and tribulations I was experiencing. If you don't have this diagnosis, it is very difficult to truly understand what we go through on a daily basis. Not only have I made friends through this community, I have become a community greeter to welcome new members to the site. Simply stated, I can't imagine a life without the Ben's Friends communities. It would be a tragedy for myself and many members to lose the support, information and connections that we develop from this support site. I am a social worker and understand the role of online support groups and how important they can be in a persons life. I feel safe, supported and welcome in this community. Not only has it been beneficial to get support from this community, but it has been an amazing experience to offer support to members as well.
People with a rare disease face challenges in lots of ways: getting diagnosed and finding specialists skilled in managing their conditions, finding ways to help loved ones understand what is going on.. The list goes on. Ben's is a fantastic community for a number of rare diseases that demonstrates true community spirit globally. People often arrive confused, scared or feeling isolated and after a few weeks have formed friendships that can last a lifetime. They find options on how to live better with their conditions from others who have had similar experiences and challenges. Sometimes, just having someone really understand what you're going through makes life a lot less scary and lonely. Its a great place to share thoughts and start planning how to live your life to the max, regardless of your condition. It also has heaps of information for those supporting their loved ones.
I have Idiopathic Spinocerebellar Ataxia and am a member of Living with Ataxia.
Before joining the group I felt very alone with this rare progressive degenerative disease, it was a revelation to discover other people felt the same as me, they understood my symptoms. Support groups are essential for anyone coping with
a challenging condition.
I have been a moderator for a couple of years now for both the CIDP (Chronic inflammatory demyelinating polyneuropathy), and the GBS (Guillain–Barré syndrome) communities on "Ben's Friends". I have enjoyed working with all the great staff & members of both these communities. This is where people who have these disease's can learn more about the disease or share their story/comments with others.
"Ben's Friends" have numerous communities to help people who need information about their disease/disorders, or just need a place for emotional support. I have found so many members in these communities are very supportive and love to share with others.
I am proud to be a member of such a great non-profit organization as "Ben's Friends".
I was diagnosed with light chain amyloidosis on 5/29/12. I engrossed myself in the research on the illness and began to search for groups where I could learn more, share what I have learned and experienced, and provide some support as possible. Ben's Friends has allowed all of that. It is a wonderful group of people who are willing to share, to ask, to find out, and to just allow others to vent their fears and concerns. I am so thankful to have found the group!
I have gained so much from the Livingwiththeeagle community- I was floundering when first diagnosed as my doctor knew so little, but through BFs I learnt the treatment options, and was able to find a doctor who could help me. The emotional support has been amazing, I've made friends across the world! And now I'm in a position to volunteer to give others the support I've had the benefit of. I also go on another site for an as yet undiagnosed condition, and through that again I've gained support and information- and the moderators all have the condition, so all know what people are going through.
I was diagnosed with chiari malformation last month and I have an upcoming decompression surgery July 8th. I found Bens friends to be very helpful because there are a lot of people sharing experiences which I found to be very helpful.