When our first daughter Eliza was born she was absolutely beautiful and seemed perfect in our eyes.
After about a week her skin became sallow. We suspected jaundice, so we did what every good parent did at the time in these cases. We stripped off her clothes and placed her safely on the window ledge, waiting for the sunshine to do its magic.
When that didn’t work, we called our pediatrician, who sent us to Salt Lake City’s Primary Children’s Hospital.
The news was shocking. Eliza had biliary atresia. She was born with no bile duct connecting her liver to her colon. What could we do? The doctor told us there was an experimental surgery that may prolong her life for a time, but the outcome was rarely successful and there was nothing more they could do.
I was 24 and my wife 20, and we were faced with a terrifying choice. This was long before the Internet. There was no way for us to do our own research, connect with other parents of children with biliary atresia, or join a support group for comfort or advice. At the time we were not close to our families.
We were totally, devastatingly alone, making the most agonizing decision of our lives. After long hours of consideration, rather than subject Eliza to the risk, pain, and isolation of surgery, we took her home and prayed for a miracle. It was not to come. Four months later, as my wife held her in her arms, she died.
Last year Lisa Schill with EveryLife Foundation invited me to represent our Social and Digital Innovation team at RARE on the Road—a conference sponsored by EveryLife Foundation and Global Genes to help patients with rare diseases, their families and caregivers advocate for better research and protocols. My assignment was to teach them how to use social media to amplify their voices.
As I prepared my presentation I checked out the location. The conference was to be held at Primary Children’s Hospital. As I googled biliary atresia I found that it was classified as a rare disease, effecting about 1 in every 12-20,000 newborns.
I knew what I should say to them. I would share with them what I would do if Eliza was born today.
Search all the current information available about your disease or illness. Then start with strategy. What is your objective? Who are you trying to reach? What do you want them to know, feel, and do? What is the best social media platform to reach them? How can you measure your success?
Once you’re clear about strategy, identify the social media channel that best reaches your audience. Start sharing the things you care most deeply about. Post interesting, useful information using text, video, or images. Help people understand their disease, their options, and the support you can provide.
Build a community where those who experience your disease can gather to share their fears, their heartaches, their hopes, their advice, their successes, and, sometimes, their grief. Provide accurate information. Facebook groups, problematic as they are, can provide a safe place.
We would have given everything for such a community. At times I'm haunted that we would have made a different, better decision if we could have talked to parents in similar circumstances. Whether you suffer from a rare disease, support someone who does, or work for a hospital or clinic, you have a remarkable opportunity to make a profound difference in someone's life.
Our ability to connect with others has advanced light years since that tragic day my wife and I struggled alone to make the right decision. Even with all its warts, social media is an incredible gift — sometimes even a miracle —when it connects people and information at the time of greatest need.
Ed Note: EveryLife Foundation and Global Genes are sponsoring free conferences again this year to bring critical education and insights to rare disease patients, caregivers, and other advocates. The final conference is July 13 in Sioux Falls, SD. Find out more.