I took care of young adults with cystic fibrosis when I was in my residency training and found this to be a disease that was desperately in need of some explanation.
Sentiment: NEGATIVE
While there is no cure, cystic fibrosis is so close to being a livable disease. There is a lot of hope.
Personally, I had a close friend with cystic fibrosis. I won't ever forget how he handled himself. In the face of extreme challenges and very harrowing circumstances, he maintained a positive outlook and was just very dignified, even in his suffering.
My natural mother passed away from cystic fibrosis when I was a toddler, so I feel a great deal of empathy for people who are struggling with disease.
My own area of expertise is the genetics of human disease. I was fortunate to be part of the team that found the genes for cystic fibrosis, and Huntington's disease and neurofibromatosis.
The terrible, diabolic thing with this disease is that you are always looking behind your shoulder every couple months with the most recent checkup to see whether there is any sign of it, and I thank God to say at this point there is not.
Before my mother's diagnosis with Alzheimer's, I had heard of the disease, but hadn't known anyone who had suffered from it.
Most people, when they hear the disease name, it's all they know about it. It sounds so mild. When I first was sick, for the first 10 years or so, I was dismissed. I was ridiculed and told I was lazy. It was a joke.
As a child, I had a serious illness that lasted for two years or more. I have vague recollections of this illness and of my being carried about a great deal. I was known as the 'sick one.' Whether this illness gave me a twist away from ordinary paths, I don't know; but it is possible.
In medical school, it's quite possible to get taught that you can diagnose everybody and treat everything. But then you get out in the real world and find that for most patients walking through your door, you have no idea what's causing their symptoms.
I am not a physician, but I am deeply interested in diagnostic categories and have read extensively in the history of the subject.