A Strange Twist for Those Living Beyond Childhood with CF, Other Rare Diseases

Why is there a growing trend of adults receiving care from pediatric doctors?

Meet Rachael Goldring. She is a vibrant 24-year-old who has just spent her first year since birth without any hospital visits. You see, Goldring lives with congenital heart disease. A few years ago, someone with this disease most likely would have died before the age of one. But with the medical advances in the past few decades, children are surviving these diseases and surviving into adulthood.

In a weird turn of events, these medical advancements have been met with a healthcare system unequipped to provide up-to-date care for adults who require lifelong care.

Today, survivors like Goldring are living much longer lives than those diagnosed in the past. While, once, the life expectancy was bleak for children born with congenital heart disease, sickle cell disease, spina bifida, and cystic fibrosis (CF), now, the life expectancies have greatly increased.

These types of rare diseases do require extensive lifelong care, however. And unfortunately, there are less healthcare providers equipped to handle adults with these diseases. Consequently, many patients like Goldring end up seeing pediatric doctors for their medical care way past the age of 18.

Many conditions can get worse around the age of 18, and these types of diseases often see a spike in death rates around the early 20s. CF is an example of a disease where children are living longer than before, but often struggle to find care as they get older.
How can healthcare be improved for these patients?

Clinics are trying to give non-pediatric doctors more training to work with young adults who are chronically ill. Also, a new fellowship track for training doctors to work with adults with congenital heart disease is in the works.

Fortunately, Goldring’s doctor is happy to provide her care, and she has time to look for another doctor who is equipped to help her stay healthy. Goldring has a lot to celebrate: A healthy past year, hope for healthcare for those living with childhood diseases, and even an upcoming wedding this October.

Read more on NPR here!

To learn more about CF, check out our partners Cystic Life and Strawfie Challenge.

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