Comments on: Haemochromatosis: When Blood Donation Is Just What The Doctor Ordered

By: Renee

Renee — Tue, 26 Mar 2024 09:43:18 +0000

I took a lot from this article, thank you April.

Here’s my experience. I’m a trans woman, with compound homozygous haemochromatosis. My sister is compound heterozygous, and we both have genetic haemochromatosis. Mine was diagnosed in my 20s years before I transitioned, and fortunately my symptoms were recognised. In my case I have been remarkably lucky.

However, my sister was medically gaslit for 18 years, and told her haemochromatosis was not severe. My sister was also told it only affects men, that it was her anxiety, that she just had “the genes”. We’re in our 50s and, due to swift treatment, I am healthy. My sister, on the other hand, has heart and pancreatic failure caused by iron overload.

Doctors are finally taking her seriously and her current phlebotomist is a godsend. However, the unwillingness to take my sister seriously over the years has effectively signed her death warrant. Their ignorance has cut her life short. It’s all very well and good pretending to listen to women, but we must also take their medical concerns seriously. Not everything is ‘anxiety’.

By: Lilly

Lilly — Sun, 14 Jan 2024 19:18:20 +0000

My dad died a few weeks ago and they cited this as a cause. Never even heard about it,but it makes sense because he always had dark skin and sore joints. I’m being tested now and I’m terrified.

By: Zane

Zane — Sun, 10 Dec 2023 23:27:09 +0000

It’s thanks to this article that I finally have a diagnosis, after nearly 20 years of liver disease which had “no obvious cause”. Wish I had seen it earlier as I’m now 55 and on the waiting list for a new liver and pancreas. Doctors only recently admitted that my GH was the cause. Worse still I’m black, and despite having Irish ancestry my doctors refused to test me on the basis of my skin colour. The author is right to get a handle on this early…it’s a scandal we don’t have checks for this when a person is born.

By: Angela Rawlins

Angela Rawlins — Tue, 03 Oct 2023 15:28:58 +0000

I have been trying for 2yrs to get genetic test. Paternal strokes and death at 50. GM strokes, Aunt. I have Compound Heterozygous and having a hard job being taken seriously. I have PAF & T2 diabetes, which I’m told is NOT caused by my GH! But they cannot, not be affected. I know lot of Anatomy & Physiology through my profession and the body all works together!
I got lot of tests coming back and will see what they show.

By: Hilary Elder

Hilary Elder — Tue, 03 Oct 2023 15:20:57 +0000

I live in France and my doctor sent me for the gene test, which 3 days later came back positive. I habe been sent for mri and ultrasound and have another kidney mri scheduled. I have an appointment with a gastroenterologist next month. The healthcare here is superb, even though sometimes you may have a wait for a specialist. My doctor was unhappy with a high ferritin result in a blood test and organised everything.

By: Morgan

Morgan — Thu, 31 Aug 2023 14:55:32 +0000

I’m 24 and I’ve been pursuing a diagnosis since I was 14. Blood banks in the UK reject me because my ferritin is over 1000, but my GP isn’t concerned.

By: Amelia

Amelia — Mon, 03 Jul 2023 15:55:49 +0000

My father died of haemochromatosis last week and he was diagnosed as compound heterozygous when he was in his thirties. His treatment plan was completely blasé. Next week would have been his 58th birthday. My sisters and I all carry at least one gene. It’s the UK’s most common genetic disorder and yet we’re doing absolutely nothing about it. It’s bizarre.

By: Chris

Chris — Mon, 19 Jun 2023 18:16:33 +0000

It’s not that often you chance across an article outlining the UK’s most common genetic disorder. Relieved it’s getting some attention, because even as a white male, my symptoms were ignored until I was in my fifties and hospitalised with liver failure and pancreatic disease. I’ve been following the study released by The Lancet and been counting my blessings I’m not female, because I thought the gaslighting I experienced was bad enough. The misogyny throughout the medical profession is diabolical. Glad to hear you’ve got an early diagnosis in comparison to other women with the disease.

By: Elena

Elena — Sat, 10 Jun 2023 07:32:19 +0000

I am from Galicia and just diagnosed with this, am 23 and a woman. My doctor said it was nothing, but my hands and toes are very sore. I will ask if I can donate blood to make myself better. How are you feeling now??

By: Martin

Martin — Thu, 08 Jun 2023 21:14:09 +0000

The good news is, you’ve caught it early. A lot of doctors consider compound heterozygous carriers and sufferers to have the “lighter dusting of haemochromatosis.” however, there was also a publication in The Lancet a few days ago, which suggested that only young white males should be tested for haemochromatosis. I think there is an element of sexism when it comes to diagnosing in this condition, and this will kill.