We were deeply moved hearing about your story. I am an American doctor (medical physician) working with the White House and several U.S. government agencies on Blue Button health data. Blue Button is a movement started in the U.S. that intends to make sure everyone has access to their own digital health records.
One of my colleagues, and another Presidential Innovation Fellow, Ryan Panchadsaram, is leading a health design challenge (healthdesignchallenge.com, healthdesign.challenge.gov) to help people envision the visual design of the health record.
I hope you will be willing to allow us to translate your health data into English to serve as the basis for designs in the challenge. Please let us know if that would be okay.
Best,
*******, MD
p.s. Outside of this, if it is okay with you, I would like to refer you to some colleagues at Memorial Sloan Kettering Cancer Center in New York, and their neuro-oncologists who specialize in brain tumors. You may have already been in contact with them. Low grade gliomas are a bit of a management dilemma, as the decisions are not often clear. I commend you on your bravery to let the world collectively view and comment upon your medical situation it is a rare and beautiful gift that you have given us, and I pray and hope for your speedy recovery and health.
