People with rare disorders tell me how they are diagnosed

One month later, it all happened again, but this time I was at home. An ambulance was called, and the doctors kept me for a few hours, but in the end they sent me home. But then, it happened again! I was about 40 pounds lighter because I was barely eating, and I constantly had unbearable stomach pain. That was enough. I took time off work to see several doctors at several hospitals across the country, spent thousands of dollars in tests (even with insurance), and after several procedures, including two major surgeries, one hospital told me they thought they had found the answer — but I I needed to take a specific medication to confirm their theory. Fortunately, the medication worked, meaning I finally had an answer and a diagnosis, but that was really just the beginning. Why? Because my diagnosis is so rare that only six doctors in New York City are trained and equipped to take me as a patient (that number may or may not still be standing).