Now You See Them…Now You Don’t: Health Care Transitions for Young Adults with Chronic Medical Conditions and Disabilities
By Santi KM Bhagat, MD, MPH | Friday, July 16th, 2010
By Santi Bhagat, MD. It seems that children with chronic medical conditions and disabilities (CMCD) just disappear into thin air when they grow up. No-one tracks these young people, so we have no idea what happens to them. We don’t know if they have insurance and doctors; are sick and in emergency rooms; go to school and have jobs; and/or live independently and have social lives. It is estimated that 600,000 young people with CMCD enter adulthood every year, into a system devoid of any supports and services, a system that is completely unprepared for them.
To help improve things for children with CMCD as they transition into young adults , Physician-Parent Caregivers (PPC), is launching EMERGE–a new campaign next week…stay tuned…I will be blogging more about that in the coming weeks.
In the meantime, I would like to introduce a special PPC young adult leader, Amy Long. Amy is one of America’s 8.2 million amazing young adults with CMCD who push through barrier after barrier and never give up on their dreams. Amy gave me permission to share her first person account of what it is like to be a young adult with a chronic medical condition. She calls it, the Google Circus.
GOOGLE Circus
Five years ago, I aged out of my pediatric skeletal dysplasia clinic (a place for kids with bone diseases). I will never forget my first two adult medicine experiences….The first happened late one Fall evening.
I was in college dorm my senior year and I woke up from a late afternoon nap with a terrible headache, flashes of light and floating dots in my vision. I have a rare connective tissue disorder and form of arthritis called Kniest Syndrome that puts me at risk for a detached retina. The flashes of light and floaters are common symptoms of retina disease. Retina detachment is only fixable in the first 24 hours. I immediately called Student Health who told me they could get me into see an eye doctor next week. I tried to explain that I couldn’t wait that long but no one seemed to take me seriously. All the doctors had left for the day. I called a friend and we drove the Emergency department.
We arrive. I spell Kniest no less than 3 times for the tirage nurses. They lead me back to the eye exam room and leave the door open with my chart hanging there. The doctor grabs my chart, starts to come in, looks at my file. His eyes widen and he backs out of the room. Through the open door I watch him try to Google Kiiest Syndrome. He flips through the links and then finally after five minutes comes back in and sheepishly asks me, “So what exactly is going on?” I tell him, yeah I have a migraine-like headache, and I am seeing stars. I have a collagen disorder that causes high myopia and thus very fragile retinas. “Yes, yes, how exactly do you spell your condition?” I spell Kniest 2 more times. I then watch him turn around and type Kniest Syndrome into Google. (more…)









