Patient story


by Liz Mahoney

Her name was Gail. She was a scleroderma patient who was also diagnosed with pulmonary hypertension. Gail had successfully run a scleroderma support group near her home for several years. She began asking me, as the "advocate" from Olsten Health Services (as we were called then) to start a PH support group in the Boston area.

I thought to myself, I've no idea how to do this! Gail reassured me all we needed was a room, and some snacks and the rest would take care of itself.

I made arrangements with one of the PH treatment hospitals in Boston to reserve a meeting room for us. Flyers were sent out, the food was ordered and the rest, as they say, was history.

From that first meeting on a cold night in December way back in 1998, Gail's vision of a PH Support group in Boston has grown into support groups in each of the 6 New England states and one specifically for parents whose kids have PH.

Gail didn't get to see all the success of her "nudging" me 7 years ago, but I am certain things would have been so different had she not been so passionate about getting a group together.

Thanks Gail for being a "nudge".


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.