Canadian Acromegaly Registry

The Canadian Acromegaly Registry is a Canada-wide registry that collects information from people diagnosed with acromegaly. Information on quality of life is collected directly from the patients and medical information is collected in specialty medical clinics. The information is then used in a variety of ways to better understand acromegaly and improve how the disease is diagnosed and treated.

Some potential benefits of joining the Canadian Acromegaly Registry include:

  • Help find meaningful treatments for acromegaly
  • Help improve care for individuals affected by acromegaly
  • Learn about other important research in acromegaly

Anyone living with acromegaly and residing in Canada is eligible to join. Your participation in the registry is completely voluntary, confidential, and free of charge. You can withdraw at any time.

To learn more about the registry and how to participate, please visit www.acromegalyregistry.ca.

Acromegaly Awareness Day: Why it is important

What Is Acromegaly?

Acromegaly is a rare disease that results from excessive secretion of growth hormone (GH) from the pituitary gland, usually caused by an adenoma (excessive growth of normal cells). It has serious, life-altering implications for the patient and can impact quality and longevity of life. Acromegaly is treatable. Early diagnosis is key to treatment success.

Acromegaly is characterized by a broad range of manifestations. A recent study has identified three manifestations that were frequently present at diagnosis: morphologic manifestations (83.7–87.9% patients), snoring syndrome (81.4% patients), and fatigue (79.2% patients). The study also reported that there is a discrepancy between patient- and physician-reported manifestations (see table 1).

Clusters of symptomsFrequent symptoms
as reported by patients
Frequent symptoms
as reported by doctors
Morphological changesEnlarged hands
Enlarged feet
Facial changes
Articulation of the jaw
Metabolic complicationsExcessive sweatingThyroid disorder
Erection disorder
Vaginal dryness/amenorrhea
Symptoms related to the size of the tumor massVisual-field disorder
Symptoms associated with a comorbiditySnoring/sleep apneaArthropathy/back pain
Glucose intolerance/diabetes
Fatigue and weight gainFatigue
Table 1: Frequency of some manifestations of the disease at the time of acromegaly diagnosis as reported by patients and doctors

Acromegaly Awareness Day

Acromegaly Awareness Day on November 1st was launched in 2015 by Jill Sisco, President of Acromegaly Community (USA), in recognition of Tanya Angus and others who have passed and who brought awareness to the disease. Tanya Angus passed away on January 14, 2014; she was 34 years old. Tanya Angus was a patient that was forthcoming with her acromegaly history and created awareness around acromegaly, through social media, TV and a website.

Years later, we still have approximately 80% of patients receiving a diagnosis too late to resume a full normal life. This is not acceptable and there is a need to continue awareness activities. This is particularly true given the fact that treatments discovered in the last ten years make a huge difference, and a significant portion of us can now be in remission.

Reference

For more information about how to improve early detection, you can read this paper.

Researched and written by André Parent and Dianne Sauve

My Long Journey to Being Diagnosed with Acromegaly

My name is Dan Biocchi and my journey began in 1996. I had gained a lot of weight, but lost the weight just as quickly and didn’t feel well. The doctor confirmed my suspicion—my fear—that I had Type 2 diabetes—one of the common symptoms of acromegaly.

Being an Olympic athlete and knowing the best way to fight this disease, I took the task of getting fitter. I cycled every morning. I ate a diabetic diet. I did everything one should do to control the diabetes.

Over the next few years, my diabetes became more acute, controlled through diet to light medication, including Metformin. There were signs that things were a bit different. I had mood swings, anxiety, excruciating joint pain, sleep apnea and hypertension.

In 2004, I was hospitalized for ketoacidosis and was now insulin dependent. After this ordeal, we thought life would become somewhat normal again.

In 2005, we lost our family doctor and started our search for a new one. In our patient-doctor interview, the doctor immediately advised me that I would be referred to a specialist, an internist who specialized in diabetes. In 2006, I finally met with the specialist and was referred to a comprehensive program at the hospital—an inclusive team approach to help diabetics. This team included a doctor of internal medicine, a dietician, physical activity trainer, nurse practitioner and a psychologist, plus had a supervised exercise program that I attended three times a week. Even through exercise and diet, the nurse practitioner could not understand the instability of my sugars and the insulin required to keep my sugars at a normal level. It seemed that my body was resisting the insulin.

I met with the internist every three to four months to review my chart and check my insulin and medication. I would tell him about the sugar highs and lows, and how painful my joints were. I once told the internist, “I feel like I’m growing.” And yet, there was no reaction from the specialist who knew from test results that I also had an enlarged heart, high blood pressure and hypertension—all key signs for acromegaly.

Between 2006 to early 2008, I was still not doing well—I still had high sugar levels and drastic sugar lows of 2.5 or lower.

In February 2008, I asked my family doctor to be referred to an endocrinologist for a second opinion.

In November 2009, I finally met with the endocrinologist. I talked about my diabetes, and the endocrinologist asked if my hands and feet had always been so large. I advised her that my shoe size was now a size and a half larger and my hands were so big that I had issues getting gloves to fit properly.

On December 2, 2009, I was finally diagnosed with acromegaly, and a few weeks later, it was confirmed that I had a brain tumour. I was advised that surgery was required.

The first Endoscopic Endonasal Approach brain surgery (EEA) took place in March 2010, followed by a second in October 2010; both were unsuccessful. Then in July 2011, I went through a round of radiation using CyberKnife—a robotic radiosurgery system. Unfortunately, the tumour is still intact and still producing growth hormones.

I am stable now but suffer from Acquired Brain Injury (ABI), which manifests itself with short-term memory issues and sometimes lack of filter. I also suffer from free-flowing anxiety and depression. I continue to suffer from fatigue, high blood pressure and diabetes, and I no longer produce my own testosterone or natural cortisol. I take numerous medications including a monthly injection, “Sandostatin”, to help regulate the growth hormones.

My wife and I have lived this journey together. When we started our journey there was no support for acromegaly patients in this area. We are both so appreciative of Dianne Sauve for founding Acromegaly Ottawa Awareness and Support Network.