“Forever Grateful for Contacting the Canadian Hemochromatosis Society”
Growing up, I was as very energetic youth, highly active in sports. I have four siblings, we grew up on foster homes from a very young age, and we didn’t know our biological families. By the time I got diagnosed with Hemochromatosis, both my foster parents had deceased, which made it difficult to collect medical information therefore it became a priority of mine to learn about my biological family’s medical history.
Between 2000 and 2009 my physician observed a pattern in my iron levels. He did talk to me about Hemochromatosis; however he never elaborated on the history and damage it could do if left untreated. My iron levels seemed to increase through the years; nonetheless my physician assured me I had no reason to be concerned.
In June 2009, at 33 years young, I moved to a new city, and found a new doctor who I saw from 2009 to 2011. The following symptoms began in April 2010:
- extreme fatigue
- abdominal pain
- increased glucose levels
- menstrual irregularities
- frequent urination during the day and night
As months progressed, symptoms worsened inhibiting my quality of life. In August 2010 during a follow up visit with my physician, diabetes came to mind because of increased glucose levels, but a diabetic test confirmed that wasn’t it. My thyroid was tested and that showed normal. Nevertheless my iron levels were just shy of 500. A genetic Hemochromatosis test confirmed a Hemochromatosis diagnosis. Phlebotomy treatments were started right away on a weekly basis.
Soon after my diagnosis, I started reviewing my medical file which I had obtained from my previous physician. I knew he was keeping an eye on my iron levels, because he had recommended that I stay away from red meat, cereals containing high iron and vitamins containing iron. But I was surprise to read that he had diagnosed me with Hemochromatosis in 2005 but never notified me.
The first thing I did after I got diagnosed was ask my doctor for literature; she had none. I looked at the blood clinic there was no literature; I visited a Canadian Blood Services clinic and again found nothing. That’s when I turned my research turned to the internet.
I googled “What is Hemochromatosis” on the internet and found the following video on YouTube http://www.youtube.com/watch?v=_6ZEVBdXoBI.
My second search was “hemochromatosis support groups in Canada” and that’s when I came across www.toomuchiron.ca.
I am forever grateful for contacting Mr. Bob Rogers, who was then the CEO and Executive Director of the Canadian Hemochromatosis Society. Mr. Rogers was truly a blessing, a sweet kind loving man. Mr. Rogers and his entire team are dedicated individuals who create awareness and organize frequent visits to several parts of Canada. A+ to them for sharing their invested interest in educating patients and volunteers on hemochromatosis. They were able to answer my questions and address my concerns. After speaking with him, I knew one day I would work with the Society, although I wasn’t ready to become a volunteer at the time. I made periodic donations by pressing the “DONATE NOW” button on their site. It was the least I could do to thank them for their support.
My family physician at the time referred me to an Oncologist / Hematologist. I show up my first visit in December 2010 feeling better since I had been in treatments for five months. The specialist was in his 70’s and had not seen a patient in his 30’s walk into his office in his entire 40 year career. He suspected a misdiagnosis, therefore, a second genetic test done. He was tremendously surprised when the diagnosis confirmed positive mutations (C282Y and H63D); he had never seen it at my age.
I was encouraged to have my immediate family members tested. Of course, most of my family members felt great and didn’t feel the need to get tested. One of them is diabetic, has arthritis to the point he walks with a cane, and somehow refuses to get tested. Some requested a genetic test but their doctors have convinced them that they don’t have hemochromatosis based only on their iron levels, and others refuse to get tested because they’d have to stop drinking alcohol and they don’t like needles. Accepting my diagnosis was difficult but it’s twice as difficult to educate my family members and to share this information with physicians.
In July 2011 my husband and I moved to our home province of New Brunswick, closer to both our families. I found a new physician and a new specialist shortly after. My specialist is sweet, kind, caring, and a considerate doctor, he goes out of his way to explain in detail what I need to know and ensures that I understand. Today, I feel great! I still get tired after treatments and thirsty, but I no longer experience the rest of my symptoms.
In May 2013, Mr. Rogers came to Moncton where we held an information session in hopes to capture the attention of a few Maritimers. We were pleasantly amazed when the tiny room set up for 30 people filled up with approximately 90 people; it validated my reason for building the chapter in Moncton.
It’s been three years since my diagnosis. Blood work and treatments vary between three to four times a year and its going well. I have a lot more energy, I walk a minimum of 6 kilometres a day, in the summer I train for 5 and 10 kilometers runs, I’ve successfully completed a college program, and I manage a fundraiser.
I have recently committed to the Canadian Hemochromatosis Society team and I’m building a new chapter in Moncton, New Brunswick. As a hemochromatosis patient, building this chapter is important.
I’m looking for volunteers to help me spread the word here in New-Brunswick. If you’re looking for a great volunteer opportunity, please write to me at firstname.lastname@example.org.