David Fajgenbaum: If being a rare disease patient has taught me anything, it’s that you need to be your own advocate

David Fajgenbaum, Physician-Scientist at the University of Pennsylvania, shared a post on LinkedIn:

“If being a rare disease patient has taught me anything, it’s that you need to be your own advocate.

There’s a common desire among us when facing health challenges to find a doctor who can provide all the answers, allowing us to simply follow their guidance and not worry about the intricacies of our conditions.

However, my own journey has taught me the value of being an active participant in my treatment plan. Had I adopted a passive approach, accepting the first set of answers without question, my story might have ended differently.

This isn’t about placing undue pressure on ourselves to become medical experts or single-handedly revolutionize treatment options.

Rather, it’s about recognizing the power we hold when we engage actively with our care, seeking out specialized centers, connecting with relevant foundations, and exploring all avenues for the best possible care.

I would love to learn in the comments how have you taken an active role in your healthcare journey!”

Source: David Fajgenbaum/LinkedIn