Rachel Rodriguez62 said:I would be so grateful if anyone dealing with this syndrome could share their experiences. How were you diagnosed, what kind of treatment did you undergo, and how does it impact your day-to-day life? Please feel free to share anything else you think would be helpful regarding this condition.
Thank you.
Hello everyone, my name is Marina and I am 21 years old. This grueling illness struck me when I was just 9. To be blunt, the first warning signs were unmistakable: I gained an immense amount of weight in a single month—a 9-year-old child weighing 140 pounds is not right. A small hump started forming on my back, and my skin looked absolutely terrible, almost like I had some sort of skin infestation. Naturally, with this disease, not a single one of my medical results was normal—blood work, blood sugar, urine, blood pressure, digestion, vision... everything was off. After those initial tests, I was rushed via emergency referral to Children's Hospital in New York City. The doctor met me right at the entrance and immediately transferred me to the fourth floor—I can still vividly remember that. What followed was an endless barrage of lab work: ACTH, THC, Cortisol... and finally, the grand finale: an MRI. They finally pinpointed it—a tumor located on my adrenal gland. They operated on me, and I was actually in a coma for 12 hours due to the heavy anesthesia. By some miracle, I woke up. I spent the night in the operating room, was moved to a ward the next morning, and after a few days, I was back on my feet. All that excess weight just melted away. I stayed in the hospital for another seven days before they finally discharged me. By the time I was 13, I started getting into extreme sports and resumed living a completely normal life. Even though my wound opened up once, I pushed through and kept playing despite the doctors telling me not to—honestly, it’s all mental. To this day, I refuse to let myself feel sick or weak. The whole point of all this is that you have to be stronger than any illness. Healthy living, sports, and staying active are everything. Following the surgery, I underwent hormone therapy for six months, which prevented my hair from falling out or anything else from going wrong. To this day, I still get my cortisol levels checked every six months via a blood test at 8:00 AM and again at 4:00 PM. There have been several times where I’ve had to draw my own blood for that 4:00 PM test because our local endocrinology clinic isn't open at that hour, so don't let anything catch you off guard. Fight hard and fight fiercely, because your life is the most precious thing you have. If I could overcome every obstacle life threw at me as a little kid, I truly believe you can fight this too. Keep your head up and never think of yourself as "sick." In reality, it's just a tiny little knot that appeared in your body, and you have to chew through that knot yourselves to stay strong.
