I took my kid to the pediatric cardiologist today. It was in the medical building complex up the hills of Portland where they have Dorenbacher’s, Shriners and Oregon Health Sciences University Hospitals—all the best medicine we have available to modern humans. The reason we went was to keep my youngest healthy.

While she didn’t have any current symptoms, she has had a recent positive DNA test for Vascular Ehlers-Danlos, (vEDS) a rare and severe genetic connective tissue disorder that affects blood vessels and internal organs. As of the last couple of years, these genetic tests have been increasingly available to identify illnesses before physical symptoms manifest. Which is great because historically, many vEDS diagnoses have been made during autopsies.

The problem, my frustration, is that because of the rarity, I end up being the main source of information in these meetings. Firstly, there is no universal chart that has the complete family history. So, each time I meet with a new specialist, I have to rattle off my history, my father’s history, and whatever I remember of my brother, aunts and cousins. The doctors jot it down, but it’s all hearsay. I do not have access to my deceased father’s records let alone the sibling, aunts, cousins and grandparent. My knowledge is based on what random relatives with have relayed to me and I remember—a haphazard game of medical telephone.

Secondly, each doctor is a specialist on one part or system of the body. Today it was the heart, last year it was the brain. Were the febrile seizures related to this diagnosis? Do her unusual digestive issues play into it too? Were her two elbow dislocations related? What practical steps am I supposed to take to help keep my child well? Is there a special food she should eat or avoid? Which sports and activities are going to help and not harm her? Is there any updated guidance?

Finally, and most infuriating is the insurance that dictates how genetic diagnoses are approached. While we were with Kaiser, the doctors ordered MRIs, Providence, on the other hand is satisfied with echocardiograms. Each company has different in-network medical specialists, portals and charting systems that don’t automatically update each other. It’s a lot to juggle, let alone pay for.

Thankfully, my daughter is fine right now. The highlight of our visit were the vending machines in the lobby and the two Hello Kitty stickers she got at the end.