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A Sudbury, Ont. woman who spent years in tears as her nose, chin, hands and feet gradually kept getting bigger was shocked to learn that changes to her physical features were caused by a brain tumour.
Rebecca Churan says she couldn’t understand why she was inexplicably “getting uglier” as her jawline and chin continued to grow and her feet went from size 8.5 to 10.
Over the span of at least a decade, doctors diagnosed the now 29-year-old with a range of conditions including borderline diabetes, polycystic ovary syndrome, anxiety and depression. As her body kept changing, Churan became increasingly desperate for help, visiting another physician earlier this year.
“I told this doctor that my face was changing, and I was getting uglier, and that I didn't understand why I was gaining weight since I was barely eating,” Churan told the Daily Mail. “She issued me a blood test and then called me back in and told me I had a pituitary tumour based on the results of that test.”
That test measured insulin-like growth factor, or IGF1, which controls tissue and bone growth. Depending on a person’s age, a typical reading ranges from 97 to 297; Churan’s was 1015. Further examination found that she had a benign tumour in her brain on her pituitary gland, which releases hormones that control human growth.
It caused acromegaly, a rare condition in which the body produces excessive amounts of the growth hormone, causing body parts to become abnormally large. The condition gets its name from the Greek words for “extremities” and “enlargement.”
When acromegaly begins in childhood, it can lead to giantism, as seen in André the Giant and the late actor Richard Kiel, who played the steel-tooth villain “Jaws” in two James Bond films. When it develops after someone has reached their full height and their bones are already fused, different parts of the body will being to grow and tissue becomes thicker, says Dr Ali Imran, a professor of medicine in the division of endocrinology at Dalhousie University.
Acromegaly affects approximately three to five people in a million, with about 2,000 Canadians living with the condition. However, those numbers are likely low.
“Many people remain, unfortunately, undiagnosed forever,” Imran tells Yahoo Canada. “The actual prevalence of disease is much higher what is currently being reported.
“The reason is that many of the features of acromegaly are very nonspecific, and others are slow to develop,” he explains. “For instance, one common feature is the hands and feet begin to enlarge and the facial features begin to enlarge, but the change is so subtle and so slow, it may take many years before somebody notices. If a doctor has not seen a patient for a number of years they can see the difference, but on a day to day level the difference is very hard to notice until it becomes really obvious. Many of the other features like excessive sweating, weight gain, aching joints, and sleep apnea are so common in the general population that most people won’t put two and two together. As a result, diagnoses can be delayed from up to 10 years or even more.”
Other symptoms include skin tags, enlarged tongue, deepening of voice due to enlarged sinuses and vocal cords, headaches, impaired vision, decreased libido, abnormalities in menstrual cycle and erectile dysfunction.
Overgrowth of bone and cartilage can lead to arthritis, while thickening tissue can cause carpal tunnel syndrome. Even organs, including the heart, can enlarge.
The most common treatment is surgery to remove the tumour, with the pituitary gland reached through an incision in the noise or upper lip. Sometimes, unfortunately, not all of the tumour can be excised; they can also recur. Radiation and medications are other options, though Imran notes that drugs are expensive—in some cases, “up to several thousands of dollars a month”.
Churan had her tumour removed through her nose. Her hands, feet, and facial features shrunk down to a normal size within months.
She’s going public with her story to raise awareness of acromegaly and encourage people who may be having similar symptoms without explanation to seek medical help. The Canadian Pituitary Patient Association has marked November 1 as Acromegaly Awareness Day.
“There really is no information other than extreme cases online,” Churan said. “There's barely any awareness or tools to help people recognize the signs, so many cases are diagnosed as hormonal disorders. I saw the scariest photos of André the Giant and others who had not been treated early on during the process. I was mortified, scared, and hopeless.
“I had this tumour for over 15 years based on the photos I've looked back over, but I just thought it was the way I was ageing at the time,” she said. “You must stay positive and find hope in any way you can while fighting. I want people to understand that a simple blood test can often diagnose a pituitary tumour. Don’t just accept any diagnosis without digging deeper and asking if something else could be causing it.”
Besides the physical effects of the condition, there’s the severe mental and emotional toll it can take.
“What is important is for people to understand is that these rare disorders can be devastating for the people who suffer from them,” Imran says, urging people with acromegaly to seek specialist care, such as that available in Nova Scotia. “Caregivers and the public need to know how these affect the lives of a small number of people in a very bad way. The major problem which we find is chronic pain, ongoing arthritis, and nerve problems. Even after treatment, many don’t feel better.
“The psychological impact is just immense,” he adds. “People who have gone through a lot of health issues end up very frustrated that they haven’t been able to find an answer and realize their condition was missed for 10 or 15 years and sadly they have to live with this for years. This is not an easy problem; there’s no easy fix, but we’re fortunate to be living in a country where treatment is available.”