experts by experience
My story begins at a time when there was little information about celiac disease, and when going gluten-free was a trend or a lifestyle choice.
As leader of the Mayo Clinic media relations team 15 years ago, I became aware of how patients were increasingly using blogs, discussion boards, and other social networking [...]
I was 48 years old when I first encountered serious illness – I was diagnosed with breast cancer. It came as surprise since no one in my family had breast cancer. I needed a mastectomy and underwent six months of chemotherapy – the toughest 6 months in my life! [...]
In 2001, at the age of three, my primary focus in life was watching Powerpuff Girls–and keeping my one-year old brother from drooling on my collection of stuffed animals. Not surprisingly, I didn’t notice when my dad started acting strange. Even my mom was unconcerned at first–his personality changes seemed trivial enough.
Usually an [...]
January 2014–After three years of being treated for pneumonia, at age 35, with five children and an insignificant medical history, I learned that I had a weird-named disease–scleroderma, which had no cure. I also learned that I would need a double lung transplant.
Fast-forward to September 2016–I was admitted to a university hospital in [...]
What if I told you the hardest thing about living with a genetic bleeding disorder, like hemophilia, isn’t the joint damage, the surgeries or any of the other physical hurdles? What if I told you, what “hurts” the most is going through a lifetime worth of struggles, disappointments, obstacles, and being told no! The [...]