“I think we all have a role to play to help others learn more.”
My Hemochromatosis journey began many years before my diagnosis on April 30th, 2013. Many years of suffering from unexplained health conditions was very frustrating and tiring. Receiving a diagnosis was almost rewarding in a way; it meant that there was really something medically wrong within my body.
Thanks to a doctor friend and the support of the Canadian Hemochromatosis Society, I learned to become my own advocate for my own health and the health of my family members. There had never been anyone in my community or my area diagnosed with this disease, and our health care system wasn’t sure how to respond to the need for regular phlebotomies. This meant that I needed to leave my community for several weeks in order to obtain regular phlebotomies. I used this time to lobby my health care provider for nurses in my community to be trained to offer this service, as I knew that I would not be the only one in my family with this disease. I also used this time to learn everything I could about hemochromatosis and how it could affect a person’s health.
Other members of my family had genetic testing done following my diagnosis and it was discovered that one of my brothers and my two children were also plagued with this disorder and required regular phlebotomies.
I took a very conscious approach to my health and reached maintenance in 4 months and have been consistent with regular blood work and making sure my ferritin and iron saturation levels are kept in the ranges that my doctor requested. I do a lot of advocacy in my area and often do radio interviews to raise awareness of hereditary hemochromatosis. When I meet people who are newly diagnosed I advise them to get in contact with the Canadian Hemochromatosis Society and avail of the great work that they do.
I have been living with this disorder for four years now and have had the opportunity to share my story with others through the CHS website and other sources of media. It appears that more and more people are being diagnosed with hereditary hemochromatosis and I am sure the work that CHS is doing in raising awareness is contributing to this. I think we all have a role to play to help others learn more. By being my own health advocate, I saved the life of my brother whose ferritin numbers were not readable because they were higher than the lab medical staff could record in our province.
I live each day with some complications that I believe have been caused because of my late diagnosis; however, I try to stay positive and be thankful that I am still here, as often times people don’t find out they have hereditary hemochromatosis until it’s too late and their body is too damaged from the iron overload. Even though there have been some great work done around educating people and health care providers about hemochromatosis, there is still work to do! I will continue to be an advocate for this disease and if I can prevent one person from suffering any longer than they need too, I will have done my part!