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.

CARE PAGE

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…

http://pituitary.org/

https://www.acromegaly.care/

NORD https://rarediseases.org/

https://globalgenes.org/

http://patientworthy.com/

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.

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