The happiest day of my life should have been the day I got married or the birth of my son. But for me, it was June 12, … Read More
My story began in February 2015, or so I thought. I woke up one morning with my legs swollen again and it felt like my heart was racing. I made a doctor’s appointment that day. My blood pressure was out of control. My primary care doctor requested some blood work, and when my test results came back, I was able to review them online. There were a few test results that were either a little too high, or a little too low, but nothing significant. I did some research on my own and asked my doctor to request a test to check my cortisol level because I thought I had Cushing’s disease. He kind of laughed at me and said that he has never seen a case of Cushing’s in his 29 years of being a doctor, and that it was extremely rare, but he would request the test. The test results came back and my cortisol level was more than double the normal limit. My doctor said that my cortisol level was a little high but not to worry about it. I sent an email asking him, how can it be double the limit but “not to worry”? The next day I had an appointment with endocrinology. I was very fortunate that I could review my blood test results online. If not, I might still be very sick or worse.
My Cushing’s journey started many years ago. I was born in Russia, in a big city called Voronezh. As a child, I was sick a lot with upper respiratory infections and strep throat. Physically, I was much weaker than other kids my age. I also had different skin problems such as rashes and inflammations which were hard to treat. Also, when I dealt with stressful situations, like difficult exams, I became sick with flu like symptoms.
According to the Global Genes Project, upwards of 300 million people worldwide are impacted by rare disease. Catch the full feature on the reach and impact of rare diseases, such as Cushing’s, at this link.