… you wake up to 300 emails every morning! … you’ve never met your best friend in person! … you know more about NF2 then your neurologist!
The NF2 Crew is an online support group formed many years ago by several members of ALDA (the Association of Late Deafened Adults) who realized they were all late-deafened by NF2. They joined together with the intent of supporting each other through an email list, and have evolved into so much more than any of us could have prayed for...
The Crew has grown so much over the years that it is now an integral hub of the NF2 community. My own Mother was one of the first members, and I remember as her disease progressed all of her friends were online buddies she had made through the Crew. She would spend hours reading through the mail and communicating with her friends, the only people who could understand how she felt. Sadly, my Mom lost several very close friends to NF2 and just could not handle the heartache of repeatedly attaching herself to people who were dying. Between her fear of opening up only to lose again, and her waning vision, in her final years she chose to leave the Crew. At her insistence I joined and picked up where she left off. It was a wonderful gift that she gave me. I have made amazing friends. I have a place I can go and just vent to people who have been there, and don’t just nod in pity, but rather compassion. People who knew my Mom, and knew her struggle, and now we all struggle together.
Perhaps most importantly, the Crew is the preeminent place to get information on up and coming treatments and technologies. NF2 is a relatively rare disease, and many people are hard-pressed to find a doctor who knows enough to guide them through years of complicated health issues. There is strength in our numbers. As we share knowledge between ourselves we develop a standard of modern NF2 treatment, and demand a level of competence from the doctors who treat us. Through networking on the Crew I have learned of a drug therapy that I am currently taking on a trial basis called Propolis. I will go more into Propolis in its own post, but I will say the results have been promising, and I never would have found it without the Crew. There are people on the Crew who have studied and researched this disease more thoroughly then any doctor I have met, and all of the Crewbies reap the benefits.
Recently I have volunteered to moderate the Crew’s mail list, and I am proud to give anything back to this group of outstanding people who have done so much for my Mom and myself. If you are interested in learning more please visit us at http://www.nf2crew.org/.