But its last post was three months ago. And it is a very specific niche issue. (Obviously very important to those affected.)
And (of course) our overlapping neighbours in the Pernicious Anaemia Society!
But not a decent forum which specialises in ferritin, transferrin, haemoglobin, etc.
All too often, I think iron gets viewed as an issue you get suffer because of something else. Not important enough in its own right to need, to deserve, a separate forum.
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helvella
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There are groups of various sorts around the world. But the presence here on HU would be so helpful. After all, if we suggest someone looks at another HU forum they have already pretty much got access to it by being on HU. And they already have at least some idea how HU works. It reduces any feeling of a barrier to going elsewhere.
I know that if I have to sign up to anything else, I sigh, and mutter, and probably don't do it. I have so many "memberships" that I can't remember them all!
When Haemochromatosis UK was reinvented by David Head some years back I helped with a bit of the admin, and suggested an HU forum. However, the consensus was for a public Facebook page and then another private page where members could share more private experiences, etc (like within our forum). Both pages are extremely well subscribed to.
They then started the HU Haemochromatosis forum which has always been a dead flop! So much so the admin left and HU continues to monitor it. I have suggested on the FB groups a few times that people move over 😬 🤣 but they never do 🤷♀️.
I don't know of any other iron charities that would be interested in funding an HU forum.
I used to answer posts but got fed up as there’s never any discussion or new ideas. I like learning with others. And besides it doesn’t have a ‘helvella’ 😁
I briefly looked at Haemochromatosis Society UK FB page and it doesn't seem to offer much in the way of individual patient support like we do here. Mostly saw posts about fundraising and membership.
They have another ‘family’ page which is slightly more private (although anyone can join) and this is where members queries and discussions happen. It is extremely supportive.
Although a private group it astounds me what sensitive and private information members post about themselves using their FB profile (pics an’ all) 🤷♀️
Ah, well I didn't see anything on their website to point me at that FB page. Perhaps you only get told about it if you pay for membership or something?
I absolutely love that HU allows for and positively encourages total anonymity.
Because anaemia is primarily diagnosed and dealt with by GP’s, I don’t think the full implications of insufficient iron levels are widely recognised. Like the accompaniments of Hashimotos that apart from the thyroid gland, are completely ignored by the medical profession.
Private clinics are picking up this and we see advice being offered regarding iron insufficiencies and transfusions offered. The NHS is years behind.
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Why am I experiencing migraines, muscle twitching and generally feeling poo 💩?!
Should I be concerned about high levels of Iron
Excess iron in the blood? Doc Peatfields Book
Guidance re: unusual iron/ferritin results, please
