In one of my other lives, I am a Assistant Clinical Professor at the UCLA School of Medicine in the Department of Family Medicine. This is a fancy way of saying I donate my time to help teach first year medical students. I have been doing this for the past 10 years, and it has always been one of the most enjoyable activities that I do as a physician. Specifically, I help tutor a group of about 8 or 9 1st year medical students in the Doctoring course, which mainly teaches students how to conduct a medical interview by using actors who play the scripted role of a "standardized patient".
Last week, as each small group does every year, we visited the home of a family of a child with a chronic illness. This gives the students an opportunity to see firsthand the effects of a chronic condition on the physical, psychological, financial well-being of a family. In previous years, we've visited families of children with Tourette's, Type 1 diabetes, Down's syndrome, and cerebral palsy.
This year, we visited the home of John Paul, a 3 1/2 year old boy with Diamond Blackfan anemia, also known as DBA.
It is a very rare disorder, with about 350 people in the US having the disorder. His mother eloquently described the family's frustrations, hopes and determination in giving John Paul as normal a life as possible. Which is hard to do because John Paul has to get blood transfusions every 2-3 weeks to replace the red blood cells which his bone marrow fails to make. Because of the multiple transfusions, he has developed liver dysfunction due to iron overload and therefore must undergo daily chelation therapy with a portable infusion device attached to him that runs 12 hours a day. Because he is easily prone to infections, his family rarely takes him out and they've had to limit their own socializing for fear of bringing back a virus. On top of all this, his parents both work, and his mother is a tireless advocate for the cause of DBA and the recruitment of blood donors.
Because there are so few people with DBA, there are no government-sponsored funds for research. Instead the Diamond Blackfan Anemia Foundation was formed to help raise money to finance research for a cure.
John Paul's family is truly a brave and remarkable family. The medical students and my co-tutor and I were impressed and touched by their story. On their behalf and on behalf of the many people in need of blood, I encourage all of you to not only donate blood, but to become a regular blood donor. It is one of the easiest ways to save a life.
I'll be rolling up my sleeve this week for my donation.
8 hours ago