Day 26 #WEGOHealth #HAWMC
Create a “care page” for newly diagnosed patients. Pull together five of your own blog posts and five external resources you find helpful.
External resources I found helpful… I only ever use one pituitarynetwork.org “Just the facts ma’am.” The others I am listing have good information but also need to be recognized as deeply tied to pharmaceutical companies. This is clearly a theme of mine… That acromegaly healthcare is not well rounded nor sufficient because it is drug based only. I need my acromegaly drugs and I am beyond grateful for them but there is so much more…
Since, I just started this blog as a health activists challenge, each of the past 25 days has something to offer a newly diagnosed acromegaly patient.
It is of the utmost importance that you are your own advocate. If you don’t understand your disease this I where you need to start. Not from “support groups,” but solid facts. Feel free to listen to advice but research it. Every acromegaly patient is different. Every doctor/patient relationship is different. Every outcome is different.
You must have specialists as primary care givers. Never a general practitioner for acromegaly care. Not even a typical endocrinologist but a Pituitary Specialist. Not a neurologist but a headache specialist. Not an MRI but a Contrast MRI. Don’t be afraid to fire doctors and move on. Day 12, “Dr. What’s Your Name” is a good example.
But you’re newly diagnosed so. EDUCATE yourself. LOVE yourself. BE KIND to yourself.
It is a LONG journey BUT it is YOUR JOURNEY.