Joining the community of rare disease
Yesterday evening, I was invited to join our local hemophilia support group on Facebook. I ended up staying awake for the next four hours reading pretty much every post and comment over the past year. It was both addicting and fulfilling to hear the voices of so many people who have lived with the same condition as our son. Some are parents with children of similar age as ours, some are parents with years of experience watching their children grow up with hemophilia, and others are the former children themselves who are now living fulfilling adult lives. So many fascinating stories of bruises and bleeds and recoveries and successes and advocacy and adjusting to a new normal. At the end of the day, these were fundamentally normal lives that just happened to be missing a little bit of factor.