Art With A New Vision

By Matthew Gironta
cushings patient story

As a person who has art running through her blood, Helaine Zwibel is always using her eyes. The masterpieces she creates vary from fine art to pamphlets designed to encourage children to eat their vegetables. However, the eyes that she has don’t always work in her favor. A diagnosis of Cushing’s disease has completely changed her perspective.

Cushing’s disease is the result of a benign tumor in the pituitary gland, which sends a hormonal signal to the adrenal glands, causing them to make too much cortisol. Although most of these tumors are quite small, occasionally one of them is large enough to cause vision loss, since the pituitary is located very close to the nerves in the brain, which control vision. Often, the patient has symptoms for many years before a diagnosis is made.

“The first time a doctor alerted me was at a routine eye exam,” Helaine relates. This was in 1998, when the physician saw something abnormal and advised her, “You should have this checked out.” At the time, she was working in advertising and taking care of her father in Florida. Due to her busy schedule, Helaine did not attend to the matter right away. “I didn’t pay attention to myself…I had deadlines. I was basically on my own,” she remarked. As the months progressed, she started to experience some vision impair-ment in one eye. She consulted many different doctors. “No one knew why this was happening. All my blood tests said that I was healthy,” Helaine explains. Due to her eye complaints, one of the doctors ordered an MRI, which confirmed the presence of the tumor in her pituitary.

Once the tumor had been seen on the MRI, she required surgery. The surgery, however, did not go as planned and the surgeons had to stop before the entire tumor was removed. After the surgery, she developed some concerning symptoms. “By the end of 2000, my whole head was swollen, I had blotches on my skin, I looked like I gained 50 pounds, and I had trouble walking…like I couldn’t get my muscles to go,” Helaine recalls. The condition seemed to be getting worse, so she decided to consult an endocrinologist.

Routine blood tests do not test for Cushing’s disease. Once a physician suspects Cushing’s disease, special blood tests must be done to confirm the disease. Helaine saw an endocrinologist, who performed some additional testing and identified the hormonal cause of her symptoms. Helaine’s urinary free cortisol level was elevated at 155 micrograms per 24 hours, when the normal cortisol level in that lab was reported as being less than 50 micrograms per 24 hours. Therefore, the diagnosis of Cushing’s disease was made. Helaine’s endocrinologist started her on medications to lower her blood cortisol level and improve her symptoms. Subsequently, Helaine underwent radiation treatment to the remaining of her pituitary tumor.

Since then, Helaine's condition has improved drastically. There was a small setback about three years ago with a spinal fluid leak, which required additional surgery. Her symptoms have improved, her cortisol level is under control, and both her vision and her pituitary tumor are stable.

Currently, Helaine Zwibel is healthy and has a new outlook on life. When asked how Cushing’s disease affects her daily life, she emphatically replies, “It doesn’t.” She says that she is thankful for her diagnosis, because it made her realize what is really important in her life. Helaine quit her advertising job to work on her art full time and has not looked back since. She no longer focuses on the trivial parts of her life and would rather nurture the relationships she has with her family and friends. Helaine is using her artwork to elevate everyday images that people take for granted and is working on a line of children’s pamphlets that put forth a positive message. Helaine muses, “As an artist, when you show work, people like it or they don’t…I do it for me. That’s what I focus on.”