Patient Stories & Experience

"And They Said It Couldn't Be Done" 

It had been a long road for patient Roberta Weigart, but it is finally taking a turn for the best. Roberta is not unusual in that she has been battling leukemia since her early 20s, nor is it unusual that the side effects of fighting that battle took a toll on her body. The unusual nature of Roberta Weigart is in her spirit and determination. It is this and the medical treatment she received that she wishes to pass along in this story. Read more of Roberta's story 

I was diagnosed with McCune-Albright Syndrome at age 2. 

McCune-Albright Syndrome is a rare endocrine disorder which can affect the bones, skin and endocrine system. I have polyostotic fibrous dysplasia, which occurs when normal bone is replaced by softer, fibrous tissue. I was fortunate to be diagnosed at an early age. The disadvantage to having a rare syndrome is that my doctors could not tell me what to expect as I aged. The one thing I heard repeatedly was that I have "brittle bones" and needed to be careful. I proceeded to lead a very physically active life; skiing, running, motorcycle riding. I am not a good patient.  Read more