Videos: Hereditary Hemochromatosis

Some of the following videos are available as podcasts. Download the podcasts here and listen from wherever you are.

2022 Information Session: “Q&A With Dr. Paul Adams in London, Ontario”

Dr. Paul Adams joined our Manager of Programs and People, Liz Charyna, for an in-person Q&A information session in London, Ontario. The event was also streamed live for our online participants. Topics discussed included: When are maintenance phlebotomies no longer needed; Survival advantage of hemochromatosis; hemochromatosis and non alcoholic fatty liver disease; hemochromatosis and COVID-19; what symptoms would improve with phlebotomy treatment; can a phlebotomy be less than the standard 450-500 cc; should we be genetically testing babies; how far away are we from gene editing therapies; take-aways from results of the HEIRS study; modifiers of the HFE gene; understanding your genetic results; doctors familiar with hemochromatosis.

 

2022 Information Session: “Q&A with Dr. Paul Adams in Waterloo, Ontario”

Dr. Paul Adams joined us for an in-person QA information session in Waterloo, Ontario. The event was also streamed live for our online participants. Topics discussed included: anemia and menopause as it relates to hemochromatosis, ancestral links, physician knowledge on diagnosis and treatment of hemochromatosis, liver tests, all about genetics, compound heterozygotes, ferritin tests versus transferrin saturation tests, maintenance phlebotomies (how necessary are they?), diet and more.

 

2022 Wellness Session: “Trauma Informed Body Movement” with Personal Trainer Gabi Varga

In this session, Gabi Varga leads us through an easy-to-follow, full body mobility session suitable for all levels that will help you feel more limber and flexible. Only a yoga or exercise mat, a chair and a towel or yoga strap will be needed.

“My career started with teaching group fitness classes nearly 20 years ago. After moving to Vancouver in 2012, I changed my focus to 1-on-1 training.

My personal experience with trauma has led me to a new path, Trauma-Informed Personal Training. I have realized that trauma can alter movement patterns. TI-PT has a wide variety of tools to support clients in a safer way than conventional fitness can.

My philosophy is to help people educate themselves to make more mindful choices along their health journey. I believe that individuals living with Hereditary Hemochromatosis can live a healthy and movement-rich life by knowing how to move in a safe way.”

Visit gvlifestyle.ca for more information on Gabi and her services.

 

2022 Séance d’information: « Génealogie de l’hémochromatose » avec M. Pierre Laporte

« Le présent projet découle d’une étude de la phylogénétique dans le domaine de l’évolution des êtres vivants. Le concept de base de la phylogénétique est que deux espèces ont un ancêtre commun dans leur évolution respective. Un principe identique prévaut en généalogie, deux individus ont nécessairement un ancêtre commun, même s’il faut remonter à Adam et Ève ! En combinant l’analyse généalogique avec les principes de phylogénétique et ses techniques d’analyse, on peut en apprendre sur l’histoire de la transmission du gène responsable de l’hémochromatose. » M. Pierre Laport

Nous remercions M. Pierre Laporte de nous avoir offert un regard fascinant sur son projet de généalogie au Québec. Merci au Prof. Pierre Brissot pour sa contribution.

 

2022 Wellness Session: “Introduction to Fermentation” with Lifetime Member and Certified Vegan Chef, Rayne Kuntz

Certified raw vegan chef and Canadian Hemochromatosis Society lifetime member, Rayne Kuntz, joined us for an hour of healthy food making and introduced us to the benefits of fermented foods. Download the recipe sheet to review the ingredients and equipment required. Visit sageplantcuisine.com for more information on Rayne and her recipes.

 

2021 Série de conférences pour les membres: « Qu’y a-t-il d’important et de nouveau pour les patients hémochromatosiques en 2021 ? » avec Prof. Pierre Brissot

Dans le cadre de notre série de conférences pour les membres, le professeur Pierre Brissot se joint à nous pour une présentation en français ayant pour thème: “Qu’y a-t-il d’important et de nouveau pour les patients hémochromatosiques en 2021 ?”

Le professeur Pierre Brissot est professeur émérite de médecine et ; Membre de l’Académie nationale de médecine; Ancien président de l’International BioIron Society ; Fondateur ou Co-fondateur de la FFAMH (Fédération Française des Associations de Malades de l’Hémochromatose), de la EFAPH (Fédération européenne des associations de patients atteints d’hémochromatose) et de HI (Hemochromatosis International).

Nous sommes très reconnaissants au professeur Pierre Brissot et aux membres et sympathisants de la Société canadienne de l’hémochromatose d’avoir rendu cette séance possible.

 

2021 Membership Lecture Series Guest Lecturer: “Do hemochromatosis patients treated by phlebotomy have any risk of developing serious symptoms many years later?” with Dr. Paul Adams

Dr. Paul Adams, MD, FRCP(C)-Professor of Medicine, Western University, London, Ontario, has a special research interest in the study of genetic hemochromatosis. He has previously been the Editor-in-Chief of the Canadian Journal of Gastroenterology (2005-2010) and the Chief of the Division of Gastroenterology at Western (2007-2017).  He has been funded continuously by the National Institute of Health (Bethesda, MD) for the past 19 years. He currently has 345 publications including papers in the New England Journal of Medicine, Nature Genetics, Gastroenterology, Hepatology, Annals of Internal Medicine, and Lancet. He has received the Commemorative Medal for the Golden Jubilee of Her Majesty Queen Elizabeth II. In 2010 he received the Gold Medal from the Canadian Association for the Study of the Liver and the Canadian Liver Foundation. In October 2013 he was awarded an Honorary Fellowship with Distinction from the Royal College of Physicians of Ireland for lifetime research contributions to the field of hemochromatosis. He has an honorary Fellowship from the American Association for the Study of the Liver (AASLD 2014). In 2019, he received the Marcel Simon Award presented in Heidelberg,Germany (May 2019) for lifetime research achievement in hemochromatosis, and the Canadian Liver Foundation 50th Anniversary Gold Medal. He is the CASL Visiting Professor for 2019.

Dr. Adams joined the Canadian Hemochromatosis Society on October 6, 2021 to discuss his latest research paper just published in the Canadian Liver Journal. The paper explores a common question amongst hemochromatosis patients: Do hemochromatosis patients treated by phlebotomy have any risk of developing serious symptoms many years later? The study took 527 C282Y homozygotes from the clinic of Dr Adams and compared them to 12,879 volunteers of similar age that participated as control participants in the Hemochromatosis and Iron Overload (HEIRS) screening study and had no genetic mutations for hemochromatosis. Ontario has a large health care database (ICES) that can track many outcomes such as death, cancer, liver disease, joint replacement, diabetes and this study followed the 2 groups for 17.7 years. The data is expressed as the hazard ratio of hemochromatosis patients compared to this normal control group. The data is similar to another paper published in England in November 2020 (UK Biobank) which studied untreated patients discovered through genetic screening. The paper for discussion is open access and can be downloaded here.

Thank you Dr. Adams and Canadian Hemochromatosis Society members and supporters for making this presentation possible.

 

2021 Information Session: Canadian Blood Services Presentation with Stephanie Pedersen

Canadian Blood Services is the organization that manages Canada’s supply of blood products for all provinces and territories, excluding Quebec.

In March, the Canadian Hemochromatosis Society hosted Stephanie Pedersen, Territory Manager for Canadian Blood Services. In this presentation, Stephanie provides the audience with an overview of the work of Canadian Blood Services, an update on COVID-19 safety protocols for blood donors, donor eligibility criteria, and a demonstration on how to join a Canadian Hemochromatosis Group Blood Donation event using their new online booking system.

 

2020 Membership Lecture Series: “Why am I never on the same page as my doctor about hemochromatosis?” with Dr. Paul Adams

The Canadian Hemochromatosis Society proudly hosted Dr. Paul Adams  on July 14, 2020 in the second lecture in its Membership Lecture Series. Dr. Adams addressed the common conundrum, “Why am I never on the same page as my doctor about hemochromatosis?”

Dr. Paul Adams, MD, FRCP(C)-Professor of Medicine, Western University, London, Ontario, has a special research interest in the study of genetic hemochromatosis. He has previously been the Editor-in-Chief of the Canadian Journal of Gastroenterology (2005-2010) and the Chief of the Division of Gastroenterology at Western (2007-2017).  He has been funded continuously by the National Institute of Health (Bethesda, MD) for the past 19 years. He currently has 344 publications including papers in the New England Journal of Medicine, Nature Genetics, Gastroenterology, Hepatology, Annals of Internal Medicine, and Lancet. He has received the Commemorative Medal for the Golden Jubilee of Her Majesty Queen Elizabeth II. In 2010 he received the Gold Medal from the Canadian Association for the Study of the Liver and the Canadian Liver Foundation. In October 2013 he was awarded an Honorary Fellowship with Distinction from the Royal College of Physicians of Ireland for lifetime research contributions to the field of hemochromatosis. He has an honorary Fellowship from the American Association for the Study of the Liver (AASLD 2014). In 2019, he received the Marcel Simon Award presented in Heidelberg,Germany (May 2019) for lifetime research achievement in hemochromatosis, and the Canadian Liver Foundation 50th Anniversary Gold Medal. He is the CASL Visiting Professor for 2019.

Thank you Dr. Adams and Canadian Hemochromatosis Society members and supporters for making this presentation possible.

Part 1. Serum ferritin levels and symptoms

In Part 1, Dr. Adams discusses why a doctor may not be checking a patient’s serum ferritin levels and why symptoms may not lead them to immediately check for hemochromatosis.

Part 2. Your doctor’s knowledge on the diagnosis and treatment of  hemochromatosis

In Part 2, Dr. Adams delves into the topic of hemochromatosis expertise and your doctor.

Part 3. Question and Answer Period

In Part 3, Dr. Adams answers questions from the audience.

 

2020 Membership Lecture Series: “What’s new for the definition, diagnosis and treatment  of hemochromatosis in 2020?” with Prof. Pierre Brissot

On June 17, 2020, the Canadian Hemochromatosis Society presented its first online information session in its Membership Lecture Series. We were honoured to have Prof. Pierre Brissot join us live from Rennes, France, to provide us with an updated view on the definition, diagnosis and treatment for hemochromatosis in 2020.

Pierre Brissot is a Professor Emeritus of Medicine ; Member of the French National Academy of Medicine ; Past-President of the International BioIron Society ; Founder or Co-founder of FFAMH (Fédération Française des Associations de Malades de l’Hémochromatose), EFAPH (European Federation of Associations of Patients with Haemochromatosis), and HI (Haemochromatosis International).

Thank you to Prof. Brissot, and Canadian Hemochromatosis Society members and supporters for making this presentation possible.

Transcript available:

An English transcript of Professor Brissot’s lecture can be viewed and downloaded here (PDF).

 

2016 Information Session Series with Dr. Paul Adams

In October 2016, the Canadian Hemochromatosis Society held an Information Session in Guelph, Ontario, featuring Dr. Paul Adams, Professor of Medicine and Chief of Gastroenterology, University of Western Ontario. The Canadian Hemochromatosis Society recorded this session and presents it here in a series of 8 videos that cover a wide range of topics from ancestral links to research, diagnosis,  treatment, ferritin and diet.

Special acknowledgements and thanks to Dr. Paul Adams and to James Brodie Productions for producing these videos.

1. Ancestral Links

In this video segment, Dr. Adams speaks on the possible origins of the hemochromatosis gene, its migration and its modern day prevalence.

2. Proviso

In this proviso to the upcoming video segments, Dr. Adams discusses the degree of uncertainty related to science and medicine, and the various approaches to diagnose and treat hemochromatosis.

3. Research

Dr. Paul Adams goes into the discovery of the C282Y gene, symptoms of hemochromatosis, the reasons there is no mass population screening, and lessons learned from the HEIRS (Hemochromatosis and Iron-Overload Screening) study.

4. Family

Dr. Adams presents the familial risks of hemochromatosis and the potential stigmatization that arises from genetically testing children.

5. Diagnosis

Dr. Adams discusses how diagnoses are generally made…. and why some are missed. Also: what do most people have when their ferritin levels are found to be between 300 and 1000 ng/mL? Hemochromatosis surprisingly does NOT top the list.

6. Ferritin Tests

Here, Dr. Adams answers audience questions on ferritin, iron overload and liver biopsies.

7. Treatment

Scarring of the liver caused by iron overload can be reversed by treatment with phlebotomies, but Dr. Adams explains why many do not see improvement of joint pain. Also, Dr. Adams discusses situations where some individuals do not require maintenance once de-ironed.

8. Diet

Dr. Adams discusses hepcidin’s role in regulating body’s iron balance and the effects of diet in hemochromatosis.