🧵 This week is Haemochromatosis Awareness Week, and I’d like to tell you a bit about this surprisingly common genetic condition and why we should be aware of it. First, please watch this quick film (It has me being messy with my blood!)/1
@IronOverloadUK
Genetic Haemochromatosis, commonly known as ‘Iron Overload’, is a condition where the body retains too much Iron. This can produce varied symptoms and lead to serious problems. So it’s important to catch it early. /2
My other half Heidi, who writes #CallTheMidwife, had a relative affected by it. In series 9, she featured the story of Florrie – a mum who displays strange symptoms of liver disease. Dr Turner eventually diagnoses Haemochromatosis. /3 radiotimes.com/tv/drama/haemo…
As a genetic disease. Iron Overload can’t be cured, but it can be controlled very simply. The affected person has blood taken from them regularly, which rebalances the iron in their system. /4 nhs.uk/conditions/hae….
So who gets it, and how? Genetic Haemochromatosis is a recessive disorder, which means that the great majority of those affected have a particular gene mutation passed down from BOTH their mum and their dad /5 haemochromatosis.org.uk/genetics-of-ha…
Many people carry one copy of the gene variant in their DNA and never know it. Yet if they parent a child with someone else who ALSO carries the gene variant, then their child can be affected. /6
These gene variants are surprisingly common amongst those people living in the UK and Ireland – and the condition has sometimes been called ‘the Celtic Curse’, although you DON'T have to have celtic heritage to get it... /7
Last year, Heidi and I became patrons of a wonderful charity called Haemochromatosis UK (haemochromatosis.org.uk) in order to help raise awareness of this common, serious, treatable, but too-often unseen condition. /8
As part of their fine work, HUK have developed a home testing kit which can be sent off for screening of the genetic variants one may carry for the condition. /9 haemochromatosis.org.uk/genetic-testin…
As you saw in the short film, Heidi and I were delighted to take part in the test ourselves on camera, and we duly sent off our samples for analysis. As Heidi’s family had shown the condition before, we expected that she may test positive... /10
So imagine my surprise when the results came back. Heidi didn’t carry the variant... but I did! I’m a carrier of one of the gene variants for Haemochromatosis, inherited from one of my parents. If Heidi HAD tested positive, our child may have been at risk. /11
But as with all these things, knowledge is power. Treatment works, but we need to screen for it – not something that’s commonly done. To find out more, please do contact those excellent peeps at Haemochromatosis UK haemochromatosis.org.uk
Thanks for listening!! xx /END

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More from @StephenMcGann

Jun 27
Thread. The following is the testimony of Lord Amulree, a physician, recorded during a landmark debate in the UK House of Lords in November 1965 on the Abortion Bill to enable safe clinical procedure, which eventually became law in England and Wales in 1967:
“I was talking to a young man, who some years ago worked with me, and who is now working as the registrar in the obstetric hospital of one of our big towns in the North,and he told me that about every five or six weeks...
there is a rush to the obstetric hospital of women with incomplete abortions, septic abortions, bleeding from badly done abortions...
Read 9 tweets
Sep 30, 2021
That image. Of a killer able to use all the tools of the power the state had granted him to submit an innocent woman to such horror. A killer with previous....
Who am I, if I simply shrug my male shoulders, and accept that this monstrosity is merely some additional hazard to be added to the long list of women's potential horrors?
I simply do not believe that there aren't some carefully considered procurement and conduct policies that can restore much-needed trust into the policing system as a result of this.
Read 4 tweets
Jan 15, 2021
Flesh, blood, and the kindness of brilliant strangers. A thread.
Peeps who follow me might know that I’ve written a book on the history of my family, told through the medical maladies they suffered (see biog for link). My mum played a major part in that medical saga. /1
Well, today her medical saga continued. Today my elderly mum received the Pfizer vaccine. She is one of the first humans in history involved in this brand new chapter of medical science – the recipient of mRNA technology. /2
I chatted with my mum afterwards about the pioneering nature of these mRNA vaccines: nbcnews.com/science/scienc…
and of the incredible research and thorough testing carried out in double-quick time. /3
Read 8 tweets
Nov 30, 2020
Meanness is an insidious thing. I'm old enough to have watched it curdle various people's personalities - their disappointments, envies and spites slowly rising to engult their previous disposition, as life fails to live up to their own lofty expectations. /1
And fear, too. That plays a part. Fear of decline - of age - loss of control, status or importance. But meanness is a barnacle. Once it's got a grip of you, you never get it off that hull you think of as your virtuous nature. You become encrusted by your fears as malice. /2
Till in the end, it defines you. You cannot remember a time when you thought better of the world, and so twist reality to fit your tainted vision, like a thin blanket you hold around yourself. You become the expression of a failure to imagine that better things are possible. /3
Read 4 tweets
Oct 28, 2020
A word about chaos and poverty. My mum was a nursery school teacher working, particularly in her earlier years, in a very deprived area of the city. Chaos was, indeed, a major factor in the lives of these defenceless infants...
because chaos is that great and terrible side-effect of need that no glib spouting of recipes or elite theories of dependence ever really encapsulates. My mother worked hard with these children to provide stability. A safe haven. Comfort. Basic security....
When you don't have anything - when lives are lived hand-to-mouth - when parents hold down multiple jobs - when bailiffs are never far - chaos is always there. And with chaos comes hunger, missed meals, and that constant knot in the belly from low-level anxiety and stress...
Read 5 tweets
Aug 19, 2020
The constant lying in public life eventually erodes not only trust in those who do it, but any trust in the value of truth itself. This is a problem, because we all need truth at crucial points in our lives. In exams. In the courts. In the ballot box. In hospital.
Don't let others steal the truth from you and sell their version of it back to you. Protect it for your family, for your community, for yourself. Don't let the cynical lie that 'everybody lies' blind you to the fact that many don't.
Accept truth's inconvenience. Learn from its tough love. Let it make you humble, even if that makes you wrong, because it's the only friend who ever cared enough about you to want you to be wiser.
Read 4 tweets

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