| Email has led to the development of world-wide communities who share a common interest or concern. A listserve is a system whereby emails relating to a specific topic are sent to a central address, then distributed to subscribers of that list. A number of retinoblastoma listserves exist today, 2 of the most active being maintained at the Association of Cancer Online Resources (www.acor.org). Both the ACOR listserves were established by American bilateral Rb survivor and Paralympic medalist, Lori Miller. During her final degree year at Indiana's University of Notre Dame, Lori began searching the internet for sup port systems and information about long term effects of Rb. Despite locating much "medical jargon", she was disappointed by the lack of resources addressing psychological situations arising from Rb. Lori had made contact with other Rb survivors during various athletic competitions, and realised many common feelings and concerns existed among them. "I started brainstorming as to how I could link all of us together while we were scattered all over", she remembers. Through writing to the moderator of ACOR's leukaemia survivors' listserve, she was put in touch with ACOR listserve co ordinator, Giles Frydman, who gladly created the Rb list. In the early days, it was characterised by survivors, but as parents gradually joined, the list blos somed and went global. " It was my pride and joy to see this network expand and embrace many people," says Lori. For many, the online community has become a second family. "No one else knows this roller coaster ride like our Rb family", says Connecticut mum Liz Erhardt, whose 2.5 year old daughter, Abby, is battling bilateral Rb. "I've found the people on the listserve to be an incredible source of strength, support, inspiration, and information. Their love and encour agement lifts us up and allows us to move for ward day by day with a little more peace and hope in our hearts". Finding no support groups near her California home, Lori Padilia's quest for information was a lonely one following daughter Grace's diagnosis 3 years ago. " It brought so much more real life information to me" she says of the listserve where discussions range from treatments and artificial eyes, to emotional care, supporting siblings, school issues and a variety of practical tips. "I could read and learn about how others were doing, how they were handling situations and I made many new friends. A few have even ventured to visit San Diego and have spent time with us. It has really helped enrich my life in a difficult situation." Whilst the majority of members live in America, people subscribe from many countries, spanning 6 continents. 6 years ago in the Philippines, Tim and Becky Keep's 5 week old son, Jesse, was diagnosed with bilateral Rb, a cancer they'd never heard of. "We've been so thankful to have the Rb list to share with other parents experiencing the same difficulty", says Becky. It was so comforting to know that we were not alone. There were others out there battling and winning this fight, not just physically, but also mentally, spiritually, and emotionally. Life would be good again." Families often join the list some time after the initial diagnosis. Sara Sabeitan's son, Ali, had been clear of Rb for 11 months when she sub scribed, "but to finally meet people who under stood was like going home after wondering in the desert all year" she remembers. Locating the list promptly after diagnosis is an extra blessing. In Australia, Leo was 2 years old when diagnosed on Christmas Eve 1999. "I wrote in my panicked and anguished state" mum, Sandra Downing, recalls of her first email. "To say that the people helped me keep myself together would be an enormous understate ment. I have relationships with some faceless people whom I call friends because of the deep caring and compassion that we have for one another." Sandra believes the list has also benefited Leo. "Merely knowing that there are others with whom he shares this experience and will share other experiences, calms him and proves to him that a happy life does not have to do with what you do or do not have, it has to do with what you make of your daily life and how you treat others around you." In the UK, Christine Davies calls the listserve "a lifeline". "I really wish 1 had owned a computer back in the early days of Katy's diagnosis" she says. "To chat and offer support with other people who are, or have been, in the same situation is truly amazing and gives me a real sense of being useful". Sharing news of children's progress is particularly helpful to parents. As Christine says, "we can vent away if we're feeling down and tell our good news when we're feeling up!" Becky Keep agrees. "No person can cry with you when you have had a bad ELIA, or rejoice with you when all is clear, like those wonderful people on the list whose lives have also been altered by this disease". As the list has developed to a current member ship of over 160, Lori Miller saw the need for a separate survivors list. "A fellow Rb survivor and friend who was battling a second cancer summed it up to me, so I again asked and made more dreams come true" she explains. The Rb survivors list is growing well, with 60 members from around the world. Topics differ consider ably from the original list, to encompass issues such as follow up care, second cancers and other medical situations, employment and access to insurance. One of 3 Rb diagnosed brothers from New York, Jay Leventhal says "It is reassuring and some times enlightening to hear that others have experienced the same symptoms I have. I also don't have to explain my fears about cancer, as I do to people who are close to me. On the other hand, I am amazed by how little people on the list know about Rb and what they should be doing to protect themselves against future illnesses. That's why I want to make info about Rb available in more accessible forms to sur vivors, instead of it remaining in technical arti cles." "So many people out there are diligent in raising awareness of Rb and are always willing to share any information they've uncovered regarding it" reflects Becky Keep. Sharing information is a real factor in the life of the listserves, and can be very beneficial. However, like all open forum support groups, listserve subscribers may share information which is inaccurate or offensive to others. Medical concerns should always be discussed with qualified medical professionals, familiar with the individual case. Almost 3 years since joining both lists, I have learned much and made many friends. As a 27 year old bilateral sur vivor, dealing with long term issues of Rb can sometimes be an isolating affair. Knowing that the web of support embraces an international community is so uplifting. One young lady's vision has evolved into a world wide family, bringing people together beyond the limitations of space and time, enriching lives and helping to heal hearts. Abby White, Oxford. |
| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
| Retinoblastoma Support Listserves at the Association of Cancer Online Resources.. |
| ORPHANS OF THE CANCER STORM |
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| The following article was written by Abby White, and printed in the Winter 2003 edition of the UK Retinoblastoma Society newsletter. |