Noah — this is a great case study about the importance of staying with doctors who understand your c ase as well as advocating for yourself, no matter what anyone says.

Noah,

I just read this case study about a patient with a rare disorder, then ran into doctors who didn’t believe him…

The doctor who writes this story even says “always listen to your patient”, but in our current ‘evidence based medicine’ climate, many physicians have forgotten the first rule of medicine — the patient him or herself is the ultimate evidence.

You’re going to have a great life and accomplish many interesting things, especially with treatments available like IVIg and antibiotics,

but you must trust your own instincts, and develop close relationships with doctors you trust and who trust you.

As much as it’s made me mad and frustrated what happened with Dr. Butte, in other ways I’m glad I lived long enough to help guide you through an experience like this. I couldn’t even list the number of doctors who treated me the way Dr. Butte treated you (ie, dismissing the story of your atypical presentation with the flu, not to mention your countless other infections, severe constipation, etc),

but unfortunately with a rare disorder learning how to handle these types of doctors is very important. If there was anything of value to take with you, take it, but otherwise stay away.

We’re lucky to have a rare disease that can be managed with medical care, even if it’s a lot of medical care, some people aren’t so lucky.

But one of the most important lessons to learn, is to trust your own instincts, build positive relationships with a couple of doctors (you don’t need hundreds — one strong advocate will work wonders)

and learn as much as you can about your own disease, to help you communicate when you do encounter new physicians.

I love you so much Noah, you have so much to offer the world. Your brilliance and kindness amazes me every day.

Medicine will get there — they’re learning more about the immune system every day. You will see the answer in your lifetime. In the meantime, build a strong safety net for yourself and the answer will come and you’ll be ready.

Love,
Mom ❤️

As a doctor, what was the strangest, most obscure disease you’ve diagnosed? by Gregorio Calleja
https://www.quora.com/As-a-doctor-what-was-the-strangest-most-obscure-disease-you-ve-diagnosed/answer/Gregorio-Calleja?ch=99&share=fe667342&srid=DLhmI

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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