Cushing's Syndrome Pediatric Patient Stories

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My battle with Cushing's disease

By Katie Rozenas

You may not know by looking at me now, but I recently fought a battle. All my troubles started in January 2007, when I was 15 years old, and I began gaining weight. As the year went on, it only got worse and my weight gain became more and more noticeable with every passing week. Over the summer, I tried different weight-loss programs but nothing worked. It got to the point where none of my clothes fit me anymore. A red flag went up in July 2007 when I stopped getting my menstrual cycle. I went to the doctor, but she said it was probably from my rapid weight gain, and that once I lost some weight I would get it back, but just in case she referred me to a gynecologist. In December I started Weight Watchers and ran on the treadmill for one to two hours religiously, but I still was disappointed when I got on the scale. Every week I would only either gain or lose a little, then gain again. I didn't know what I was doing wrong, since I was following my points and filling up on water. I knew then that I was fighting a battle within my body for my health and self-esteem. 

I told the gynecologist my symptoms and she said I might have either polycystic ovarian syndrome or something wrong with my endocrine system, so she referred me to Dr. Madeline Fay, an endocronoligist in Worcester. Finally, after several tests, in March of 2008 Dr. Fay told me I had Cushing's disease. After a long and frustrating year of not knowing what was wrong with me, I finally had an answer. I was so relieved to find out that the weight gain wasn't my fault that I couldn't stop smiling.

Despite my happiness at knowing what was causing my symptoms, Cushing's is a rare and difficult disease. It's characterized by obesity, an inability to lose weight, a buffalo hump, stretch marks, a moon face, masculine qualities such as more facial and body hair, patches of dark brown or black skin on the neck, arms, breasts, or thighs and loss of menstrual cycle. I was very skinny before I started showing the symptoms. I had a fast metabolism and could eat whatever I wanted and not gain a pound. In all I gained 75 pounds in the course of a year. I went from 125 pounds to 200 pounds (at my heaviest). I had blamed myself for gaining the weight, thinking I had overeaten because of stress and my metabolism had slowed. So I was relieved when I found out I actually had a medical reason, but the "answer" to my problems was not simple. It is very tough having Cushing's because it's caused by a non-cancerous tumor on the pituitary gland, which is located in the brain. The only treatment for it is brain surgery. It was at this point that I knew I was facing my biggest battle ever.

The most painful thing was what my weight gain caused people in and out of school to say about me. It was so hard to wake up every morning and get dressed in clothes that would hide my body. My family thought I was eating excessively and blamed me for my weight gain. My classmates said things like, "I don't blame her for not wanting to go swimming. If I was like her, I wouldn't either" and "What, does she have diabetes?" and "Look at that girl, she's such a chunky monkey". It got to the point where I didn't eat or jump or run in front of people. I knew people were talking about me behind my back and that was bad. But if I found out what someone said about me, I was not only hurt, I also started to hold a grudge against that person. But the second I found out I had Cushing's, I told all my friends with a text message. I told people I knew, especially the big mouths in school. I did everything I could to spread the word. My parents told everyone they knew and I told everyone I knew. I would work it into a conversation, and say "Oh, you didn't know, I have a brain tumor. That's why I put on so much weight." I tried to keep my head up, but it was hard when I felt like the world was against me and time was passing me by.

The biggest challenge I had to overcome was not the physical pain—even though that was very difficult—it was the emotional and mental pain. Although my parents were physically with me the whole time, I still always felt alone. My friends looked at me differently after I gained the weight and shied away from me. They treated me as an outcast. Guys stopped flirting with me and they hardly talked to me. Once my friends found out that "Katie Rozenas had a brain tumor" it was a whole different ballgame. Some were compassionate, some were scared, some were apprehensive and some stayed the same. People became my best friend after they found out. People I hadn't really had the best relationships with in years. I felt as if no one knew what kind of pain I was going through. No one else knew what was going on inside my head and I was always very emotional because of my elevated hormones. I overcame these challenges by looking to the future and what I wanted to accomplish. There was nothing I could do about my physical state. Until the surgery, no matter how hard I tried; I couldn't lose any significant amount of weight because of the tumor. It was extremely frustrating and depressing for me to be so helpless, but I had anchors. I had the perseverance to do well in school even though I was often absent to attend doctor's appointments. Although it got to be a hassle, I knew I had to keep my grades up. I wanted so badly to stay on National Honor Socaiety and to make First Honors again. I managed to maintain an overall A average throughout the year, and I did well in my AP U.S. History class. I didn't want this illness to beat me academically as well as physically. I also kept going to Girl Scouts, until I got very sick. All through this battle, I continued on my Girl Scout Gold Award, and continued to do service projects and volunteer work for my community.

"You have a brain tumor and the only solution is brain surgery to remove it". Imagine hearing that when you're 16 years old and have never broken anything and have only gone to the hospital two or three times in your life. That was my reality in March of 2008. I knew what was in store for me, but I wanted to get better so badly I was willing to do anything to get back to normal. My parents and the rest of my family were scared.

The night before my surgery, my friend Jordan instant messaged me telling me how great I was going to do and that I was such a strong person. She said she would see me Sunday when she was supposed to come visit me and then I signed off. I was so scared that that was the last time I would ever talk to her.

So on May 16, 2008 I woke up at 4 am and was brought to Children's Hospital Boston, walked into pre-op, was taken up to the 6th floor, given a hospital johnny, given anesthesia and wheeled into the operating room to have brain surgery. Everything went well, but I woke up with a terrible headache and a sore throat. It was horrible, but I got through it. I think now about what it was exactly that I "got through" and certain aspects come up in my mind. I think about the fear of going into the operating room alone without my parents, and the fear I had of something going wrong. I truly thought I was going to die. Then I think about how I stayed strong because I knew I wasn't the only one scared. My parents were in the waiting room with my aunt and uncle clenching each other's hands. After waking up from the anesthesia, I was so tired and my throat hurt so bad that I just wanted to sleep but when I heard my surgeon, Dr. Ed Smith, say he was going to talk to my parents, I told him to tell my parents that I loved them. When they heard that, they knew I was okay I think about my small veins, how hard it is to get an IV in, and how many I had; so many that my arms and hands were bruised. I didn't like seeing my blood on the outside of me and the IVs got so sore. Then I think it's only made me braver. So when I hear someone say I have to go get blood drawn today I just laugh to myself and think about how many times I had my blood drawn.

And I wonder, why me? Then I think about those kids at Children's who won't get better and I count my lucky stars that my disease was curable. I think about the 5-year-olds with cancer and I wonder why I am so selfish

I think about how the ridicule of others has taught me not to judge others and to be more understanding because you don't know the real story. If there is one thing I want people to take away from my story, it is that you never know why the person sitting next to you on the bus is obese or what the rash is on that person who you always pass at the grocery store. I don't want people to feel sorry for me. I just want them to take from my story this moral and treat other people better. I have eyes that are less judgmental and a mind that is more open. When someone walks by me I think maybe it's not their fault. And that is one thing many people, not only 16 year olds, don't think about as they go through life.

I have lost 65 pounds since my surgery and I am feeling better. I am still on a lot of medicines but I am almost back to the way I was before. My old clothes fit me again and I feel more confident. However, every time I think about what I "got through" I think about and glance down at the battle scars that Cushing's left me that will never go away, for they will only fade in time except for when the blood pulses through my veins.

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

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