Tiny and ch (ILL)
The Story Of A Child With An Invisible Illness
I first came across Dr. Zingman a few years ago when I was the pediatrician for a very special little girl. I first suspected that Brae had Ehlers-Danlos-Syndrome when she was a very young infant. EDS is not well understood as a condition and for some patients affects almost every organ in their bodies. EDS can present with issues involving a person’s joints, their skin, neurologic system, eyes, heart, gastrointestinal tract, immunologic system and can even affect their gums. It is not uncommon for patients and their families to be dismissed as hypochondriacs and be misdiagnosed.
I voraciously read every post that Dr. Zingman shared about herself on the mutual physician mom social media group we both belonged to. Unbeknownst to her until recently, Dr, Zingman helped me immeasurably become a better doctor to Brae by helping to educate me on the spectrum of conditions caused by genetic defects in the collagen vascular system.
It is my hope that by the time Brae grows up she will have the type of health coverage that will allow her to get excellent affordable, covered care at her home hospitals in Pennsylvania but that she will also have enough money saved in an HSIA, so that she could get care from Dr. Zingman and other specialists like her as needed.
In future issues of Physician Outlook I will be discussing the concept of using HSIAs-- Health Savings Investment Accounts-- federally insured personal health savings accounts that would accrue value over time.
The title picture is of a very hyper-flexible Braelyn casually using her foot as a phone during a make-pretend chat. Read her mom’s first-person account "Believing the Invisible" to find out more about what it is like to have an “Invisible Illness.”