One of my volunteer friends died a few days ago. A few mutual friends & I were talking not just about memories but also some really raw & visceral reactions from others in regards to our friend’s death being made public.
I admit, there’s times I try to avoid getting too personal with this blog. But in the realm of rare disease, sometimes that line can be difficult to draw. Especially when one of your rare diseases is estimated at having a population of less than 350,000 worldwide & is predominately female. It’s estimated that our current online support group has a little over 800 women. Despite generalizations that women can be catty, most of us in this group play in the sandbox pretty nicely. Yet, it’s days like today that make it difficult to sleep.