PatientsLikeMe ™

In my real life.... 
Most of my real life learning has come from the my family, especially our only son Ben, who was diagnosed with the first of a series of malignant brain tumors when he was just five. Doctors told us Ben would not live much longer, but he surprised them all. Over the next six years Ben lived his life to the fullest, despite several major surgeries, many chemo treatments, radiation therapy and many hospitalizations. And he lived life with amazing grace, gentleness and humor. His attitude towards life, his love of his family and friends and his absolute delight in the simple and wonderful pleasures of everyday living taught all of us who knew him a powerful and lasting lesson about strength and courage. 

After hearing Ben's terrifying diagnosis we frantically researched all we could, trying to learn what, if anything, had helped others. This was a frustrating time, as we found it difficult to find others we could talk to, although we eventually were able to contact many experts, patients and caregiver parents who were wonderful resources.

This experience taught us how hard it can be for patients and their caregivers to get all the information they need to make informed decisions, or to deal with the day-to-day realities of dealing with a serious illness and it's consequences. We learned a great deal about this from his wonderful healthcare team (especially his nurses), and other parents. These lessons ranged from the mundane details of IVs,  to the daunting challenges of preparing for surgery, chemo sessions and other major interventions, and then making decisions in the face of conflicting medical opinions.

Since Ben's passing I have wished there were a better way for patients and their caregivers to learn and share from one another. Now at PatientsLikeMe I am able to couple my fascination with the potential of the Web with the challenges of helping patients share and learn from one another. I feel fortunate to be here, where I can apply what I have learned in my professional life to my passion for helping people help one another.