Haemochromatosis
Haemochromatosis
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Screening for the "Celtic Curse" - BBC Scotland
Thousands of people are being offered screening for genetic haemochromatosis by our charity, following the death of an Aberdeenshire woman last year.
This report from BBC Scotland was broadcast on 1st February 2024.
For further details : www.haemochromatosis.org.uk/News/screening-across-aberdeenshire
Переглядів: 1 806

Відео

Ulster TV : 1 in 10 people in Northern Ireland at risk of haemochromatosis
Переглядів 2,7 тис.8 місяців тому
Ulster TV report : 23rd November 2023
Haemoooooooooooo?
Переглядів 1,4 тис.8 місяців тому
1 in 10 people are at risk in Northern Ireland of genetic haemochromatosis. This video is part of a Haemochromatosis UK's multi-channel TV, press, billboard and radio campaign to raise awareness of genetic haemochromatosis (iron overload), in partnership with local advertising agency, Genesis and housebuilder Hagan Homes. This major integrated campaign launched in November 2023 on TV, radio, in...
Genetic Haemochromatosis : Joint pain and arthropathy with Professor Patrick Kiely
Переглядів 9 тис.Рік тому
Professor Kiely, Consultant Rheumatologist at St George's Medical School in London has been involved for many years in treating people with GH joint arthropathy. His research interests in the topic are continuing. In this seminar he explains the current state of the art treatment for people with GH-induced joint pain, as well as answering questions from the floor.
Latest innovations in non-invasive MRI scanning for Genetic Haemochromatosis
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This webinar was presented in July 2023 by Dr Tim St Pierre of Resonance Health. Tim is Professor in the School of Physics, Maths and Computing at University of Western Australia with a particular research interest in iron overload disorders. Resonance Health have developed a range of MRI software tools that help clinicians better understand liver disease and iron overload caused by Genetic Hae...
Peter's Story
Переглядів 821Рік тому
We don't often like to acknowledge it, but iron overload can kill. But it doesn't have to be like this. When iron overload is treated early enough, people can live long, fulfilling lives. But diagnosis came too late for Peter's family. This is their story. WARNING : this film contains scenes that some viewers may find distressing Filmed by Chris Chinn
How to fundraise in aid of Haemochromatosis UK
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Fundraising is one of the most important things you can do for our charity. We receive no NHS or government funding - all of our work is powered by donations. This virtual workshop is a chance to learn more about how to go about fundraising and the various fundraising options open to you with Haemochromatosis UK. Led by our charity's Philanthropy Manager Neil Irwin MCIoF* (Dip), who has over 25...
Genetic testing for haemochromatosis - how to use our test kits
Переглядів 2,9 тис.Рік тому
Get tested for genetic haemochromatosis (types 1 to 4), today! This video shows how easy it is. How does it work? * Order a testing kit online - we'll send you a test kit by post * Do the test and pop the sample it in the pre-paid post * We send you and your GP the results within 2 weeks, by post * Arrange an appointment with our Advanced Nurse Practitioner to discuss the results Plus - continu...
Haemochromatosis UK - GSK IMPACT Award Winners
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We're delighted to have been awarded a prestigious GSK IMPACT Award (in partnership with the King's Fund) for our work. This film showcases the work of the charity and features staff, volunteers and beneficiaries.
Inside the Lab
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We have heard so many stories of people being turned away from genetic testing by their GP, so as a charity, we launched our own service. #EarlyDiagnosisSavesLives #Haemochromatosis
Presentation by Claire Bloomfield to APPG on Genetic Haemochromatosis (June 2021)
Переглядів 4083 роки тому
Claire Bloomfield, CEO of the National Consortium of Intelligent Medical Imaging (NCIMI), of which Haemochromatosis UK is a collaborator, discusses practical steps to harness the value arising from health data. For further information, check out www.haemochromatosis.org.uk/ncimi
Genetic Screening Update to All-Party Parliamentary Group on Genetic Haemochromatosis (June 2021)
Переглядів 2333 роки тому
This presentation was delivered to the All-Party Parliamentary Group on Genetic Haemochromatosis in June 2021. It provides an update on the status of genetic screening in the UK, including initial findings of our charity's family screening service and a new, cross-community population screening initiative in Derry-Londonderry throughout Summer 2021. Featuring Haemochromatosis UK Chief Executive...
Skydive for #TeamIronOverload
Переглядів 743 роки тому
Haemochromatosis UK's intrepid Membership Administrator Vicki completed her sponsored skydive in aid of HUK in June 2021 to celebrate World Haemochromatosis Week. This video shows amazing scenes, taken from 15,000 feet! Donations towards this fundraiser can be made here : www.haemochromatosis.org.uk/Fundraisers/skydive-for-team-huk Every little helps. With love, #TeamIronOverload
HUK Presentation to All-Party Parliamentary Group on Genetic Haemochromatosis
Переглядів 2793 роки тому
HUK Presentation to All-Party Parliamentary Group on Genetic Haemochromatosis
BJN Nurse of the Year 2021 - Acceptance Speech
Переглядів 4743 роки тому
BJN Nurse of the Year 2021 - Acceptance Speech
Haemochromatosis UK Win British Journal of Nursing Awards 2021
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Haemochromatosis UK Win British Journal of Nursing Awards 2021
Meet Ellanor & Sarah
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Meet Ellanor & Sarah
Mark Williams - Liver cancer and me
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Mark Williams - Liver cancer and me
Hoppy Hopkinson - My liver cancer journey
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Hoppy Hopkinson - My liver cancer journey
The impact of Covid-19 on the GH community
Переглядів 1823 роки тому
The impact of Covid-19 on the GH community
Hereditary Haemochromatosis & Risks of Liver Cancer
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Hereditary Haemochromatosis & Risks of Liver Cancer
What's it like volunteering on the helpline at Haemochromatosis UK?
Переглядів 2593 роки тому
What's it like volunteering on the helpline at Haemochromatosis UK?
Breathing exercises for venesection
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Breathing exercises for venesection
An introduction to the genetics of haemochromatosis
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An introduction to the genetics of haemochromatosis
Explanation of Haemochromatosis Genetic Karyotypes
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Explanation of Haemochromatosis Genetic Karyotypes
What to do when things go wrong in healthcare?
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What to do when things go wrong in healthcare?
What is genetic counselling?
Переглядів 6814 роки тому
What is genetic counselling?
Coronavirus & Genetic Haemochromatosis (Part 2) : Ask the Doctor with Dr Susan Hancock FRCGP
Переглядів 5834 роки тому
Coronavirus & Genetic Haemochromatosis (Part 2) : Ask the Doctor with Dr Susan Hancock FRCGP
Genetic Haemochromatosis Training For Primary Care
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Genetic Haemochromatosis Training For Primary Care
Introduction to Genetic Haemochromatosis for Clinicians
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Introduction to Genetic Haemochromatosis for Clinicians

КОМЕНТАРІ

  • @Whatareyoudoingwithyourlife
    @Whatareyoudoingwithyourlife 2 дні тому

    Haemochromatosis is also common for Irish & Welsh. 1 in 5 Irish have the gene. 1 in 85 irish have Haemochromatosis. Get tested.

  • @teresalee5804
    @teresalee5804 16 днів тому

    Thank you

  • @christinekelsall2214
    @christinekelsall2214 25 днів тому

    I’m so so sorry. You & your family were let down. Our family has had similar experiences & losses because of neglect by doctors. People have to be prepared to question, to fight & to advocate on behalf of those that do not have the strength or energy to do this.

  • @timberdark
    @timberdark Місяць тому

    no sound

  • @fiona1963
    @fiona1963 2 місяці тому

    Thank you for promoting awareness of Haemochromatosis. I was pleased to be diagnosed at about 45, after years of being symptomatic and had high serum ferritin. In Australia there's no charge for HFE genetic testing if you have a family history. Also no cost if we donate blood through Redcross Lifeblood. Regular blood tests are also covered by Medicare. Mind you, it took too long for the GP's and 2 Rheumatologists to figure out why I was always grumbling about my joints. Best wishes

  • @kannakanina6552
    @kannakanina6552 2 місяці тому

    I’m waiting on a hematology referral.. I have both genetic markers and high ferratin. I can’t donate blood without a doctors approval due to my two platelet issues, also hereditary. My heavy periods from the platelet disorders were regulating me.. they stopped. My iron is going up. I don’t know how long the referral will take.. weeks, months…. Will they listen to me? I can only hope. Doctors need to be educated about this. So do patients. I’m so sorry for all you’ve gone through. Nobody should live this way.

  • @unsteadyheady
    @unsteadyheady 3 місяці тому

    🫂😓

  • @SL-eo4xi
    @SL-eo4xi 4 місяці тому

    Why don’t you talk about Therapeutic Phlebotomy at all, also you think pain relieves works better than supplements? Story Dr the only things I like about this podcast was to keep the Ferritin level lower than 50. All those pain medicine have lots of side effects.

  • @JillVITA
    @JillVITA 5 місяців тому

    I am so sorry for what you have gone through, It should never have happened like this. I am from USA with British and Scottish parents. I have been ill with various symptoms over last 2 years and now I have signs of liver damage. They ran a test and now it shows high ferritin. I just had blood drawn for HFE Genetic testing. Waiting on results. I came across your video today. Day after blood drawn. My heart is breaking for you. One doctor told me to stop drinking when I told her I had enlarged liver. I absolutely never would drink alcohol. I was so upset with how the doctors dismiss so much. Finally, I have a doctor, who probably also considered my British heritage , who felt it was time to test the genes. I pray for your family and truly I am so sorry.

  • @ohsoscenty6242
    @ohsoscenty6242 5 місяців тому

    I’m 35 and found out last year after doing 23 and me that I have two copies of the C282y variant. Transferrin saturation is 61% last blood test but ferritin is lower obviously due to my age and gender. My cousins 14 year old son is now in the middle of being diagnosed due to alarming blood results.

  • @fhamilton6788
    @fhamilton6788 5 місяців тому

    I got dx with almost 10 years ago but no doctor has told me what to do.

  • @theelizabethan1
    @theelizabethan1 5 місяців тому

    Regarding diet, greatly diminishing the "nightshades" group of vegetables can yield benefits. These are high in the anti-nutrient s, glyco-Alkaloids and Lectins.

  • @rosemary8051
    @rosemary8051 6 місяців тому

    An indicator of risk not mentioned is arthritis in the ankles that was not triggered by an injury, especially at a younger age than is common for arthritis. Knuckles are another common problem area. I suffered from this, together with fatigue and depression, for about 10 years before anyone thought to test my iron levels. I had so many other blood tests during those 10 years! When I tell people about haemochromatosis, many of them say they know they haven't got it because they " had a blood test and it was fine". But when I ask what they had tested, they have no idea. Routine blood tests that show anaemia don't reveal iron overload, because they don't measure iron. They use haemoglobin. My first step was a blood test for ferritin. This was much too high, so the genetic test followed.

  • @Jean-ti2mj
    @Jean-ti2mj 6 місяців тому

    How many das drs are there at steppinghill hospital

  • @luluvsraven
    @luluvsraven 6 місяців тому

    Made in Scotland….from girders.

  • @mattfossey2602
    @mattfossey2602 6 місяців тому

    I was diagnosed in my early 50s. I now regularly donate blood as I am on the HAE register. This way my Fe rich O Rh +ve does some good instead of being destroyed as it was after venesection. Good luck to all fellow carriers!!

  • @rorydudley3381
    @rorydudley3381 7 місяців тому

    4 years now, my joints are really bad, and fatigue is server

  • @danvining2186
    @danvining2186 7 місяців тому

    If oxidative stress causes the expression of uric acid for its anti oxidant properties shouldn't people with gout who don't drink excessively be screened for HH and shouldn't people diagnosed with HH have uric acid levels tested and given med to lowered them to under 5, maybe 4 to prevent the joint damage and osteophytes that uric acid can cause.

  • @danvining2186
    @danvining2186 7 місяців тому

    I thought the penetrance of c282y was 50-90 not 10%. What do you think about the oxidative stress caused by HH causing the body to express uric acid as an anti oxidant and this increased uric acid being the primary cause of joint cartilage break down? when does stored tissue ferritin get released, does serum ferritin have to be brought down low, under 30 for the body to see an iron deficiency and then signal the release of stored ferritin. Does stored ferritin have to be depleted before hemosiderin is released? Should we be bled when ferritin rises to 50 or above to be bled so we drop to around 20 in order to keep forcing the release of stored tissue ferritin and hemosiderin? Is this release from storage want causes serum iron and SAT% to remain high even when ferritin bounces between 20-50 and this will keep happening until stored tissue ferritin and hemosiderin are depleted and which point it can no longer be released into the blood stream to raise them. At this point will serum iron and SAT% will be back in sync and have a proper relationship to serum ferritin again? In the early stages of treatment does and stored ferritin and hemosiderin get lowered with each phlebotomy or does it remain in place until the body sees an iron deficiency, like when it does when we hit maintenance before those iron reserves are ever released since the purpose of storage is for emergency use when food and or iron in food is scarce.

  • @Nisha-kl8rl
    @Nisha-kl8rl 7 місяців тому

    Planet Ayurveda's gout medicine has become my joint rescue. The herbal blend is gentle yet powerful, providing relief without any harsh side effects. Grateful to Planet Ayurveda for their exceptional product.

  • @Carolanne1926
    @Carolanne1926 7 місяців тому

    Its 2023 i just been diagnosed with iron overload and hireditry hemochromatosis it makes sense why i was loosing weight without trying im glad i had my iron test when i did now i can start treatment giving blood

  • @DoubleDogDare54
    @DoubleDogDare54 8 місяців тому

    My parents were both carriers. My brother has it, my older sister and I do not. Bro was diagnosed in his early 30s but chose to ignore the situation. He was mildly affected so he got away with it until he hit 70, then contacted me about the "diagnosis" he'd just been given and told me to get checked. Bro was shocked when I told him I'd been tested 40 years earlier when HE was first diagnosed. He had absolutely no memory of being diagnosed. He had just shrugged it off as not being worth remembering. Not a good idea. Now he's got real damage to deal with.

  • @matriximaster
    @matriximaster 8 місяців тому

    My Dr said I have high iron, but when I give blood the tests are always in the normal range. What's up with that?

    • @KC53557
      @KC53557 6 місяців тому

      Get your ferritin tested. Iron may be ok , stored Iron is where the issue arises in form of Ferritin. You ideally want to be below 100. If you determine you are in the high 100’s you’ll need to begin phlebotomy. Barbaric , medieval way of addressing this but until crispr gene editing figures out a cure we work with what we have.

    • @JoaninFlorida
      @JoaninFlorida 4 місяці тому

      normal ranges are often ridiculous. Some labs just average what they see like they are too stupid to realize that usually blood tests are ordered when something appears to be wrong with somebody. Basically, they are telling you what is normal among sick people. Boneheads!

  • @brianlopez8855
    @brianlopez8855 8 місяців тому

    Perhaps we need to mix more with people from other southern nations ? More immigration required to the Celtic regions obvs.

  • @brianlopez8855
    @brianlopez8855 8 місяців тому

    Can we have another vaccine or at least a lockdown ?

  • @Stickleback
    @Stickleback 8 місяців тому

    A couple of Oranges

  • @paulb9769
    @paulb9769 8 місяців тому

    🤣

  • @careytitan9097
    @careytitan9097 8 місяців тому

    An inherent affliction from the Vikings. The population studies show a very interesting and distinct distribution pattern for the C282Y mutation across Europe. Regions in Northern Europe, that were established Viking homelands and settlements, have the highest frequencies (5.1-9.1%) of the C282Y mutation.

  • @janwhite6038
    @janwhite6038 8 місяців тому

    Wales, Scotland too. All Celtish orgins.

  • @jamieevans6395
    @jamieevans6395 8 місяців тому

    I have this aswell as my brothers and mom we have a venus for a pint of blood when iron levels are high

  • @lottytaylor572
    @lottytaylor572 8 місяців тому

    Guessing side effects from the evil jib

    • @stuartmurray3995
      @stuartmurray3995 8 місяців тому

      An inordinate amount of rare illnesses appearing, sky-rocketing Stage 4 cancer diagnoses and sudden deaths (including kids having cardiac arrests). Doctors are baffled, as are the public. Probably climate change..

  • @buzby303
    @buzby303 8 місяців тому

    Stop the toxic fear mongering Turn the tv off Put your phone down Get out in the fresh air Live

  • @stonedoliveees
    @stonedoliveees 8 місяців тому

    It be helpful if iron supplements could make a mention of this. So many variables that can account for tiredness, not just knee jerk assumption of anemia...Blood letting was a practice wasnt it? Seems some Folklore medicine has wisdom afterall. 😊

  • @user-ol4pz6fv1y
    @user-ol4pz6fv1y 8 місяців тому

    Try Pentosan Polysulfate ipps Zilosul the company developing this drug is called Paradigm biopharmaceuticals watch this space next blockbuster drug

    • @rubiccube8953
      @rubiccube8953 7 місяців тому

      Is this available in the UK?

    • @user-ol4pz6fv1y
      @user-ol4pz6fv1y 7 місяців тому

      @@rubiccube8953 if you look up there website they have locations in the UK Paradigm biopharmaceuticals for more information 👍

  • @crackedshamrock
    @crackedshamrock 8 місяців тому

    If the "worried well" is an issue, just go and donate blood as often as you can, and if your BP is too low, then start exercising and then donate. I didn't, and my iron overload was so bad at age 40 that I lost most of my hair and developed liver cirrhosis, arrhythmia, arthritis, etc.

  • @mommakat7467
    @mommakat7467 8 місяців тому

    I wonder how many people are diagnosed with Fibromyalgia but they have Haemochromatosis . Seems like quite a few similarities? Just a thought.

    • @amiosa35
      @amiosa35 4 місяці тому

      Me. I was.

    • @mommakat7467
      @mommakat7467 4 місяці тому

      @@amiosa35 I haven't gone for three test yet 23andme suggested I get checked. How are you doing?

  • @brudo5056
    @brudo5056 10 місяців тому

    Thank you very much Dr Tim St Pierre . This video was very interesting, gave information on high but understandable level. I was already 60+ when I was diagnosed hereditary hemochromatosis and during a 12 weeks phlebotomy procedure I asked about this MRI but was told that this was not done on routine basis… so based on this video I immediately contacted FerriScan/SmartScan to get a list of (European) hospitals/universities that can provide this MRI scan… Waiting now…

  • @josephinemiller68
    @josephinemiller68 11 місяців тому

    NSAID, steroid and antacid drugs ruin your health. The best thing is phlebotomy and an anti inflammatory diet. Nontoxic Whole Foods

  • @anne-mariemcginn2586
    @anne-mariemcginn2586 11 місяців тому

    I am so sorry for your immense loss - I was diagnosed almost 18years ago and am one of the lucky ones. Covid was an awful time - particularly for those of us who needed venesections and were unable to avail of the service - we weren't a priority. Keep telling your story - Peter's name should live on 👏

  • @JoeWatson-lf1bn
    @JoeWatson-lf1bn 11 місяців тому

    Incredibly sad to watch this story. A story which shows why GPs need more education To monitor patients for this condition. I have it and was diagnosed at 52. I’m monitored and give blood regularly now but suffer extreme fatigue so can relate to this story. The symptoms are silent unless those we trust get us proper genetic testing to rule out this condition. Love to his wife and family and thank you for sharing 💕

  • @eviebrown4870
    @eviebrown4870 11 місяців тому

    So sorry for your loss x if my brother, who lives in Australia hadn't had a genetic blood test... I would still be suffering joint pain, fatigue and depression. I'm a different woman now. It should be part of routine blood tests in the UK and educate GPs

  • @mariannegreen3259
    @mariannegreen3259 11 місяців тому

    A very interesting and informative video - just watched it today 16th Aug. I would be very interested in being part of any associated research in the future. I have 2 copies of C282Y and problems with hip and feet. For exercise I mainly golf and cycle. Use Voltarol Gel and Paracetamol as pain killers plus turmeric oil!

  • @angelarawlins3703
    @angelarawlins3703 11 місяців тому

    Absolutely heartbreaking. I’ve been trying for nearly 2 years to get a genetic test even though my brother and sister had been tested. Eventually through tenacity and presenting the facts did I get a test, we’re Compound version, no luck there because I believe no body takes this variant seriously. My fathers family has a history of early death by strokes. I have developed SVT, and recently past 4 years PAF & T2 diabetes. I believe may various hip, spine and neck problems may well be part of it.

  • @angelarawlins3703
    @angelarawlins3703 11 місяців тому

    I am SO sorry for your loss and how brave you are making this film to inform people. ❤

  • @retacarpenter6547
    @retacarpenter6547 Рік тому

    Thank you so much I was just discovered with this.. Pray I don't get cancer

  • @RickSaunders13
    @RickSaunders13 Рік тому

    Thank you. Following a life of arthritis, osteo, serum pos. RA, being presented with two copies of C282Y and this information I have a greater understanding of my own progression over 40 years (now 67). See my haematologist later this week for results of Bone Marrow Biopsy, so kind of just hoping its 'just hereditary hemochromatosis', and not one of many other additional possibilities.

  • @angelarawlins3703
    @angelarawlins3703 Рік тому

    Humans Sensing magnetic fields, yes they can, I’m a healer and do sense peoples energy.

  • @angelarawlins3703
    @angelarawlins3703 Рік тому

    I had a coil at around 45 and no periods and went into menopause having had no periods since the coil. So if I were C282y could have loaded more iron. I’m Compound with PAF & T2D

  • @angelarawlins3703
    @angelarawlins3703 Рік тому

    I am a Complementary Therapist of 25 yrs and have used strong magnets for healing muscle and bone breaks.

  • @Truerealism747
    @Truerealism747 Рік тому

    My transferin high over limit testing now haemecremotosis