Support and Discussion Groups

One of the most powerful applications of the Internet is its ability to bring together patients from all walks of life, to share experiences, advice, and support with one another. Find links to online support and discussion groups, usually carried out through message board or chat technology, in this section.

ARTHRITIS

ArthritisInsight.com Community Center
Stop by this colorful and upbeat website to participate in “support chats, informative chats, [or] fun chats,” access message boards covering a wide array of arthritis-related topics, list your birthday on the “Birthday Board” so “community members can send you their best wishes on your special day,” send e-greeting cards specially created for folks with arthritis, link to the personal websites created by many community members, and participate in scheduled “Feature Discussions,” covering important topics in arthritis. Previous discussion topics have included updates on events and presentations from the 2003 annual scientific meeting of the American College of Rheumatology, medications and testing, pain management, coping advice, insurance issues, and clinical trials.
www.arthritisinsight.com/community

Reiter’s Information and Support Group
The Reiter’s syndrome support group website reminds each and every visitor with Reiter’s syndrome and other forms of arthritis that “[they are] not alone,” and proves this by offering two public and two subscription-only forums—all of which are available at no charge—for those who suffer from Reiter’s syndrome (also referred to as reactive arthritis), ankylosing spondylitis, psoriatic arthritis, and irritable bowel disorder.
www.risg.org

CANCER

Cancersociety E*Support Groups
These “message boards, e-mail, chat services, and other interactive features offer opportunities for meaningful interaction where users can share knowledge, experiences, and other helpful information” about their cancer. There are currently nine active support groups, each focusing on a specific form of cancer or patient group: colon cancer, teens with cancer, brain tumors, parents of children with cancer, prostate cancer survivors, breast cancer survivors, testicular cancer, carcinoid syndrome, and ovarian cancer. Participants may also post to one of three “Words of Inspiration” boards, devoted to general topics, parents, and teens.
www.cancersociety.com/forum/index.cfm

OncoChat
This website is hosted by the Association of Cancer Online Resources, which describes it as “a real-time global support community for people whose lives have been touched by cancer. Oncochat doesn’t offer medical advice or professional counseling. Oncochat does offer lots of hugs and understanding from people who share similar experiences and emotions. Not all of the people who visit us are cancer patients… the chat is not always topical. Sometimes the talk is about politics, religion, families, and life in general.” Visitors need only select an onscreen nickname before jumping right into the chats.
www.oncochat.org

CROHN’S/IBD/IBS

IBD Sucks!
The impolitic and irreverent title sets the tone for this site, an online support resource for “folks with Crohn’s, ulcerative colitis, irritable bowel, and the like;” it is self-described as “the premier website for crabbing and kvetching and whining about living with these diseases, and consoling and helping and supporting” fellow sufferers. The site’s various message boards boast a total of more than 5,000 registered users, and address subjects such as “Causes and Cures,” “Diagnostic Testing,” “Nutrition and Diet,” and “Pharmaceutical Drugs.” This open, honest, cathartic resource should be among your first stops when searching for online IBD support.
http://qurlyjoe.bu.edu/webx?

Teens With Crohn’s Disease
After being diagnosed with Crohn’s disease, the author of this site, realizing that he had found it difficult to talk about his condition with others that did not suffer from it, created Teens With Crohn’s Disease “to share stories and information—for teens, by teens—with Crohn’s disease, colitis, or IBS.” Visitors can participate in online chats and message boards, post accounts of their experiences, download healthy recipes, and link to other online resources.
http://pages.prodigy.net/mattgreen

DEPRESSION

The Depression Center Support Group
While this site, “designed to help those with major depressive disorder,” bills its support group as being “professionally moderated,” no doctors act as moderators; the support staff consists of two registered nurses. Forum topics include “Understanding Major Depressive Disorder,” “Medications,” “Challenging Your Negative Thoughts,” and “Relationships.”
www.depressioncenter.net/support

Online PPD Support Group
This site offers an online support network for women suffering with postpartum depression (PPD) and mood disorders, and offers opportunities to participate in moderated discussion forums, share personal stories and experiences, and offer support to others who suffer or have suffered from postpartum depression. Specific forum sections include “PPD Frequently Asked Questions,” “Depression and General Concerns,” and “Symptoms, Medications, and Treatments;” other sections for caregivers, PPD “survivors,” and women “at a different stage in [their] life who [are] struggling with a mood disorder” are also provided. Visitors can also use a peer support e-mail list to get in touch with people who can help deal with the difficult issues attendant to this disorder. The site also features scheduled chats four days a week covering key topics in PPD.
www.ppdsupportpage.com

DIABETES

Children With Diabetes
The mission of Children with Diabetes is to promote understanding of the care and treatment of diabetes, especially in children, and to support families living with diabetes. As part of that mission of support, the site features a lively message board and several chat forums that allow children with diabetes and their parents to exchange information and wisdom, ask questions, and receive support and encouragement from a large community of people. The site also features a series of regularly scheduled chats with diabetes professionals.
www.childrenwithdiabetes.com/chat

Diabetes Station
Offering a “place for intelligent conversation about diabetes,” Diabetes Station does not require registration, or forms to complete; “all you need is your name and e-mail address to join in a discussion with diabetic people from all over the world, and to attend programs with the world’s foremost researchers and clinicians.” Visitors will find a schedule of upcoming chats and discussions posted here, along with program notes and transcripts. The site also features a message board where participants can get answers and advice from fellow diabetics regarding diet, exercise, medications, coping, and more. Another site highlight includes an area devoted solely to “Teen Talk,” where “teens with diabetes are invited to come and chat, hang out, and relax with other teens with diabetes.”
http://diabetesstation.com

EATING DISORDERS

Eating Disorder Discussion Forums and Chats
The eating disorder discussion forums at this site provide a “place where people with eating disorders can share experiences, where friends and family can share questions and find answers and where everyone can share hope, courage and strength.” Specific forum sections are devoted to anorexia/bulimia, compulsive/binge eating, issues unique to teens with eating disorders, men with eating disorders, and caregivers for people with eating disorders. Visitors can also create an account and log in to participate in this site’s “simple and free and open around the clock” chat room.
www.mirasol.net/forumschat/index.html

National Association of Anorexia Nervosa and Associated Disorders
The National Association of Anorexia Nervosa and Associated Disorders seeks to alleviate the problems of eating disorders, especially anorexia nervosa and bulimia nervosa, through education, research, and outreach. The Association’s website features several discussion forums, chat rooms, and message boards designed to enable people suffering from eating disorders to communicate with other patients, caregivers, and supporters.
www.anad.org/site/anadweb/section.php?id=4849

EPILEPSY

Epilepsy Foundation eCommunities
The Epilepsy Foundation’s eCommunities provide participants “the unique opportunity to interact with other members of [the] online audience. Participate in chat rooms. Post or respond to messages in [the] discussion forums. Schedule online activities with others. Choose the group that is right for [them] and strengthen the online epilepsy community with [their] presence.” eCommunities interest groups include “Living Well With Epilepsy,” “Parents Helping Parents,” “Women With Epilepsy,” “Teen Chat Group,” “Young Professionals Forum,” “Friends, Family, and Loved Ones,” “Seniors and Seizure Disorders,” “Entitled2Respect,” and “Kidsclub.”
www.epilepsyfoundation.org/ecommunities

Epilepsytalk
Epilepsytalk is a “new Listserv now available globally to anyone interested in communicating about pediatric epilepsy… [and] for the benefit of families who wish to share comments, concerns, and questions regarding their experiences with children afflicted with epilepsy and/or other related issues.” A sample of the subjects covered here is given on the registration page, which asks prospective participants if they are interested in “seizure disorders, Rett syndrome, infantile spasms, ketogenic diet, AED, new drugs, clinical trials, EEGs, spinal taps, pediatric epilepsy, surgery,” and other topics. Archives of previous posts are available for browsing.
www.epilepsytalk.org

SLEEP DISORDERS

Sleepnet.com Public Sleep Forums
Sleepnet.com features eight unique discussion forums devoted to sleep disorders: “Sleep Apnea,” “Insomnia,” “Narcolepsy,” “Restless Legs,” “Infant Sleep,” “Children’s Sleep,” “Shift Work,” and a catch-all forum simply entitled “Rest of the Disorders.” Archives of previous postings are also maintained; indeed, the site boasts a collection of more than 150,000 posts. Participants are reminded to make use of the site’s search function, as the large number of postings almost guarantees that answers to many questions have already been provided. Visitors can also take an online “sleep test” to see how they score for sleep disorders.
www.sleepnet.com/wwwboard/wwwboard.html

Talk About Sleep
Designed as an “all-in-one-place online destination” where patients, physicians, and other members of the sleep community can share ideas, concerns, and experiences, and come to enhance their knowledge on sleep-related issues, Talk About Sleep offers weekly chat sessions moderated by trained facilitators, with a calendar notifying of upcoming scheduled sessions. Visitors can also participate in several lively discussion forums devoted to specific sleep disorders, including snoring and sleep apnea, insomnia, narcolepsy, and restless leg syndrome.
www.talkaboutsleep.com/chat_messageboards/chat.htm

WEIGHT LOSS/OBESITY

Diettalk.com
Diettalk.com is “a place to meet and discuss diet issues with others who share the same concerns. Thru Diettalk's extensive forums and chat, people are sure to find the motivation and encouragement they need to help reach their goals.” The diet and weight loss forum on this site is truly prodigious—with more than 3,700 members, 39,000 unique threads, and more than 350,000 total posts, visitors are almost guaranteed to find the answers and support they need to meet their weight loss goals.
www.diettalk.com

Healthy Weight Forum
The Healthy Weight forums feature hundreds of posts on specific diet options, healthy recipes, exercise plans, and general weight loss topics. In fact, so many posts for healthy recipes have been submitted that a separate section has been created organizing them by type, including desserts and sweets, vegetarian dishes, seafood, and “light meals.” Participants can share their weight loss goals, ask for advice, and offer support to others trying to lose weight.
www.healthyweightforum.org/eng/forum