Whenever I tell someone familiar with hereditary hemochromatosis (HH) about my diagnosis, they’re always surprised- not because of sky high ferritin levels, or condition – but because I was diagnosed at such an early age: 19-years-old. I was diagnosed because I went to the doctor with a history of arrhythmia, but I remember telling the doc I had been feeling a bit fatigued and sluggish as well.
At the point I was initially diagnosed, I had a fasting iron saturation of 90 per cent. Another blood test confirmed similar levels, so they had genetic testing done in a larger center near my hometown. This revealed that I carry two copies of the C282Y HFE mutation. My first phlebotomy was done in 2004.
I am of Dutch/French and German ancestry, so my diagnosis was also helpful in getting others in my family tested.
The last time I was in touch with a doctor about my condition specifically was more than few years ago, I’m afraid. At that point, the doctor informed me that, as a menstruating woman, I wouldn’t need to be in touch with a doctor regarding HH until I reach menopause. Despite this advice, I have had tests done at intervals, and my iron levels have been found to be healthy, or even slightly lower, than they should be.
Beyond visiting the doctors, getting in touch with the Society has been the most helpful to me. I’m a freelance writer, who often reports on health and wellness, so the first time I reached out to the CHS was to find people to interview for a story I was hoping to publish. The first story didn’t end up selling, but the second story – a piece on Marie Warder, the founder of the CHS – did! The story has been published in Folks magazine online – please feel free to follow the link and share! Finding out about Marie, and her fight to inform the public and medical community about HH has also been helpful to me. It made me realize that many have been dramatically affected by the disorder, which is an especially good reminder to me since I am still healthy (despite having HH). Also, writing about Marie was a good reminder to stay on top of my condition, since we are becoming more informed about HH as the years go by. In fact, a couple of 2019 studies highlight the fact that HH is far more serious than was once thought (link below).
I’m currently a 36-year-old law school student in my second year (and still freelance writing as well), hoping to practice criminal law. Although these endeavours do put me in a chair more often than I’d like, I am pretty active and feel healthy. I feel grateful to the work of the CHS for informing Canadians about the disorder, so that I can be in this position, where I’m aware of HH, and have the opportunity to care for my health with this knowledge.
University of Exeter. Common gene disorder causes serious “stealth” disease, but could easily be treated. Updated January 16, 2019. www.exeter.ac.uk/news/archive/2019/january/title_700061_en.html
Link to my article: