I am rare, but the impact of the word “rare” has changed after spending years in the midst of so many other rare patients like myself. Our commonalities, shared struggles and goals for an enjoyable, livable “new normal” after surviving Cushing’s have removed all potential for isolation from my life. I absorb strength and perseverance from my peers, and I hope they get some of what they need from me in return.
What continues to be rare is a minimum acceptable standard of care offered by the medical community. Clinical experience with Cushing’s is a massive spectrum, and where we land on it dictates drastically different outcomes. It should not take hitting a geographical jackpot – living within a reasonable travel distance and having insurance coverage – to expect top notch care or even to just be believed, and yet, here we are. We are grateful for our specialists who have focused their careers on providing thorough diagnosis, treatment, and follow up. We need so many more to fill in the gaps across the globe where thousands, millions of patients do not have access to specialized medicine and care.
I am rare, and I am not alone. I am rare, and I am going to change the story for others.