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.

That night had a happy ending– I had my first migraine, not a retina detachmen,t but I couldn’t help but be terrified of what could have happened had I been really sick and I had not had adult medicine doctors who understood my disease.

A few months later it was time to find a new orthopedist because I had a nagging, worsening hip pain.  This time I had traveled six hours by car with my Mom in tow to go see an expert in adults with arthritis.

The Orthopedics department was brand spanking new and is entire separate wing of the hosptial, Mom and I decided this was a good sign. Mom and I had taken two bets that morning, one, that I would be the youngest patient by 4 decades at least and two that the doctors would have no clue what Kniest was…I lost the first bet in the waiting room, although the majority of the patients were over the 4 decade line, there was a football player who destroyed his knee and a lady about Mom’s age.

I was absolutely shocked when we were called in exactly at our appointment time, seriously Mom and I nearly passed out from shock. This may in fact be the first orthopedist appointment ever that we were actually called back on time. I passed the tech my X-rays and sat down in the consult room. The consult room was conveniently located right across the hall from the X-ray reading room, putting mom and me in front row seats for the circus.

 A crowd began to gather, Mom and I exchanged knowing glances, shoot…Then because the circus needed some PR, one of the white coats, exclaims quite loudly “Holy Moly, would you look at that…” Even more people gathered around my films.  I put my face in my hands. Mom sighed and said “We should sell tickets.”

That was my transition experience.  I was either a circus side show and/or no one had a clue how to care for me. The Google circus was terrifying, frustrating and completely unnecessary.  There is a better way to do transition both for the patients and the doctors.

Today I had a totally different experience . I just moved to a new city and am starting my first job as a pediatric resident (aka intern…aka doctor in training).  Upon moving here I was referred to the Skeletal Dysplasia TRANSITIONAL clinic at the childrens hospital.  I was a little skeptical at first because I had not seen pediatric doctors in five years. Would they treat me like a little kid?  Would they expect me to bring my parents? (who live 500 miles away)  Would they bring in 50 residents/medical students (my colleagues?!?!) to see the new weird case?

I was led to a cheerful exam room with murals and bright colors. But despite the pediatric surroundings I was treated as an adult.  Only one doctor came to see me and he was well versed in my disease both in childhood and in adulthood. My physician spent over an hour with me reviewing my current health concerns, my past history and discussing all the exciting things that go with starting my first real job.  He spoke to me as a partner in my care and encouraged me to participate in coming up with a treatment plan. He helped me line up referrals for orthopedics and an eye doctor in town.  He also helped me come up with a plan to navigate some of the more challenging aspects of my new job.  We came up with an emergency plan if I get hurt or sick so that we make sure I am cared for by doctors who know about my disease and know me.

It wasn’t rocket science, it wasn’t even an act of Congress, what happened today happened because a small group of physicians, parents and young adults in the region have realized that children with CMCD here grow up but rarely do they grow out of their need for specialty care.  For a variety of complicated reasons, adult medicine rarely gets enough training in treating childhood onset diseases much less helping young adults thrive as independent and self sufficient. It takes clinics like the one I visited where pediatric and adult doctors work together to care for young adults with CMCD.  We have a looong way to go before this is the norm but as a patient and as a doctor I am excited about being part of the movement that makes it happen. 

Because no one should have to be a part of the Google circus.

This entry was posted on Friday, July 16th, 2010 at 5:51 am and is filed under Access, Advocacy, Children, Chronic Conditions, Consumer Health Care, Disabilities, Health Professions, Patients, Patients' Rights, Young Adults. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.