Iron - wishful thinking

[helvella]

If only there were an iron forum here on HealthUnlocked!

There is one:

Haemochromatosis Society UK

healthunlocked.com/haemochr...

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.

[london81]

there is an email type group, which I joined when we thought my daughter had it [e-mail]

[helvella in reply to london81]

Thank you!

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!

[Regenallotment Ambassador in reply to helvella]

Shall we start one? I’ll join 🤗🌱

[RedApple in reply to Regenallotment]

about.healthunlocked.com/st...

[RedApple]

'Not important enough in its own right to need, to deserve, a separate forum.'

I think it could have it's own forum if there was a charity or other dedicated organisation willing to run it.

The Haemochromatosis forum on HU doesn't seem to have a direct connection to Haemochromatosis Society UK, as the forum is moderated by HU themselves.

[helvella in reply to RedApple]

I'm sure they could! But I'm not even aware of a special iron organisation that seems a feasible tenant of the gap.

[RedApple in reply to helvella]

No, that's the problem that needs to be overcome first.

[radd in reply to helvella]

helvella and RedApple

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.

[helvella in reply to radd]

Maybe the occasional post on the HU haemochromatosis forum would at least point people in a helpful direction?

[radd in reply to helvella]

hel,

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’ 😁

[RedApple in reply to radd]

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.

[radd in reply to RedApple]

RA,

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) 🤷‍♀️

[RedApple in reply to radd]

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.

[radd in reply to RedApple]

Me too 😊. It means we don't have to pretend be anyone but that ill (or well) person we feel.

[humanbean in reply to radd]

Has there ever been a charity that deals with iron deficiency and anaemia? I have never heard of one.

[helvella in reply to humanbean]

I don't think I've ever seen anything in the UK. (Probably not anywhere, but I don't want to assume about the rest of the world!)

[radd in reply to helvella]

helvella and humanbean ,

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.

[RedApple in reply to radd]

'The NHS is years behind.'

And years are turning into decades 😢

[radd in reply to humanbean]

Me neither 😕