The story of Sean
Polygenetic, multimorbidity, prejudice.
When you spend your life paying for science based healthcare to understand the challenges you and your children live with, you get to experience words like these.
Google DHNFCD
6 published cases in medical journals of the combination of NF1 and Celiac. ZERO published cases including DH, with all three being genetic. Rare as One? Two people, ONE father, de novo mutation of NF1, ONE son, hereditary NF1.
We celebrate not being dead. We have only prejudice and abuse to show for attempts to gain access to science based healthcare.
We are American. We live in Washington State. We will move anywhere in the world to gain what we will never get here: Healthcare.
Justifications for incompetence and barriers to experienced physicians is not healthcare, profitable not-healthcare, still not healthcare.
Why yes, I got tired of complaining about healthcare incompetence when I was 16 and had my first hyper-sensitive reaction to a prescription, Tylenol 4 with codeine. Being told that’s not how the human body works is not a diagnosis. If it was, I would not be looking for experienced doctors. Yes, we know, ours is not how the human body is supposed to work. Enough!
Jay is my Governor, Patty and Maria are my Senators, Bob is the State AG. Thanks to folks like them, our healthcare is political. Hi, Jay, Patty and Maria, how’s that politics thing working out? No, I won’t stop until Shayne and I have proper doctors or I’m dead. Soon I’ll be 56, Shayne is 34, we’re pretty good at not dying and being able to recognize ignorance in our healthcare, or we wouldn’t be the only two people alive and diagnosed with these three genetic conditions in combination.
Jay and Bob, you keep politicking and I’ll work on the science, I’m not asking, get and keep your corporations/donors out of our healthcare. It’s called consent.
Is our nightmare is just another “story” to be told. We hope not.