“My motto these days is: ‘Don’t just survive but THRIVE!’ Thriving means raising awareness of this rare disease and raising funds for research.”
By Mona Singh
“At the time of diagnosis, as anxious as I was, I was hopeful that I would be given the treatment I needed to immediately begin to feel and function better. Not only have the various medications given me more energy and stamina to keep up with my children and family, but I am now able to envision a future where I maintain a good quality of life.
“I may not always be able to hike Diamond Head, go camping in Yosemite, spend a long weekend traipsing around Lake Tahoe with my girlfriends or log in 20,000 plus steps on particularly busy weekends. So, my motto these days is: ‘Don’t just survive but THRIVE!’ Thriving means raising awareness of this rare disease and raising funds for research. In getting to know my fellow PHers — their struggles, their victories and, for some, their longevity with this disease — I have been given hope that many of us will see the day when we find a cure.”