“I defended my Master’s thesis during an asthma attack while puffing on my portable nebulizer! I have cough variant asthma, which is a rare form of asthma.
I also have iatrogenic (exogenous) Cushing’s Syndrome, a rare endocrine disease that causes weight gain/obesity, round or “moon” face, purple striae on the skin, and increased fat around the neck (“buffalo hump”). It is caused by an excessive amount of cortisol, in my case, by overdoses of prednisone to treat asthma. I have most of the symptoms: thin skin that bruises easily and heals slowly, hypertension, acne, impaired immune system (lots of infections), weakness, muscle atrophy in legs, anxiety, depression, headache, cognitive difficulties, and sleep disorders.
It took me over 8 years to get diagnosed and another two years before an endocrinologist, working with a pulmonologist, was able to help me get off the high-dose prednisone. But I will have to take a maintenance dose of prednisone for the rest of my life due to the damage done to my endocrine system. I also have 27 different diagnoses and I take 25 different medications to manage them. I am currently in graduate school going for my Ph.D is psychology.
Rare Patient Voice is so important to me; I read the stories and learn that I am not alone in my journey with a rare disease. Hearing other people’s methods of coping with doctors, hospital stays, insurance battles, and the activities of daily living gives me clues as to how I can manage my own situation. And most especially, I must say thank you for providing the surveys that give us a way to participate in research.”