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Rita's Story

In March of 1995 I was invited to the home of Bill Hingst. My head was shaking in disbelief as to why they [the brand new TMS Board] would want me there, yet at the same time I was so honored. I could barely spell the word mastocytosis or knew anything about it, except what I read in my first searches on the internet, which came up with abstracts from autopsy reports. I don't need to go in to detail on how scared I was with what I found on this disease, and having a husband and five children, I proceeded to make my own funeral arrangements. Today, that funeral parlor is closed and out of business. :-)

Bill, Dave, Elizabeth, and Linda welcomed Jim and I so openly, and answered hundreds of questions that day, along with trying to conduct their very first board meeting, and setting goals for this new organization. I will also never forget the ride home, as it was such an emotional roller coaster ride, but finally I had personal validation that I was not just "nuts." Jim and I both went through the happiness of finding others, the fears of the unknown, the anger of not being able to fix it all, and yet the warmth of the caring that came from that meeting left those feelings short lived.

The question still rolled in my head as to why I was there, and today I know that answer. I am honored to the be North East Support group leader, inclusive of 8 states, along with the most supportive folks around, and also honored to now be the Chairwoman of the Board of Directors and working with the most AWESOME board member team.

- Rita Barlow