International Womens Day 2023 - The challenges faced by women in the bleeding disorders community ft. Dawn Rotellini, NHF
Haemcast8 Mar 2023

International Womens Day 2023 - The challenges faced by women in the bleeding disorders community ft. Dawn Rotellini, NHF

In this International Women's Day episode of Haemcast, two influential women leaders in the community, host Dr Kate Khair and Dawn Rotellini of the National Hemophilia Foundation (USA) discuss the challenges and barriers to diagnosis, treatment and care for women with bleeding disorders. Dawn shares her personal story and the obstacles she had to overcome as a haemophilia mum and person with a bleeding disorder, as well as discussing her advocacy efforts and achievements at a national and global level.

Do we need to rethink the multidisciplinary care model in the context of treating women with bleeding disorders? Have we moved past the classification of "just carriers"? Would we do better to consider individuals at a bleeding phenotype level as opposed to bracketing people in to categories based on purely factor levels? Listen in to this episode to hear Kate and Dawn's thoughts on these issues.

You can watch the full Cinderella Stories Series on our YouTube channel.

And to find out more about the Cinderella Study check out the full publication in the Haemophilia Journal

You can connect with Haemnet on Twitter and LinkedIn or send us an email: hello@haemnet.com

Episoder(38)

Veins, verse and voices: How poetry helped Local families with bleeding disorders be heard

Veins, verse and voices: How poetry helped Local families with bleeding disorders be heard

The first in a special Haemcast series in collaboration with Local families with bleeding disorders, exploring aspects of family life.In this episode, members of Local families with bleeding disorders...

5 Mar 34min

Banana sap, mangos and factor IX — a Ugandan haemophilia B journey

Banana sap, mangos and factor IX — a Ugandan haemophilia B journey

Morris Okello lives in Northern Uganda. In this episode of Haemcast, he tells Dr Kate about the childhood experiences that eventually led to him being diagnosed with haemophilia B. As well as describi...

9 Okt 202525min

Quality of life in the balance: Helen Tate on living with Factor V deficiency

Quality of life in the balance: Helen Tate on living with Factor V deficiency

Dance teacher and Haemophilia Society trustee Helen Tate talks with Haemnet's Dr Kate Khair about living with Factor V deficiency, a rare bleeding disorder that affects around one in a million people....

21 Aug 202522min

Looking back on Terence's life: Haemophilia then and now, with Kate Khair

Looking back on Terence's life: Haemophilia then and now, with Kate Khair

Following our six-part mini-series 'Reflections on a life with severe haemophilia', with Terence O'Rourke, Haemnet's Dr Kate Khair considers some of the things that have changed in haemophilia care du...

30 Jul 202518min

Reflections on a life with severe haemophilia. Part 6: Decision-making and teamwork

Reflections on a life with severe haemophilia. Part 6: Decision-making and teamwork

The final part of our mini-series featuring Terence O'Rourke, in which he reflects on living with severe haemophilia A.In this episode, Terence discusses his approach to making decisions about treatme...

2 Jul 202514min

Reflections on a life with severe haemophilia. Part 5: Treatment impacts, life changes and hepatitis C

Reflections on a life with severe haemophilia. Part 5: Treatment impacts, life changes and hepatitis C

In part 5 of Terence O'Rourke's story, he again reflects on his working life and how this was impacted by both his haemophilia and its treatment.He discusses his approach to and choices about treatmen...

12 Jun 202513min

Reflections on a life with severe haemophilia. Part 4: The arrival of Factor VIII and an evolving career

Reflections on a life with severe haemophilia. Part 4: The arrival of Factor VIII and an evolving career

In part 4 of our mini-series in conversation with Terence O'Rourke, he reflects on changes in treatment for haemophilia and the arrival of Factor VIII.  Terence describes some of the prejudice he expe...

29 Mai 202512min

Reflections on a life with severe haemophilia. Part 3: Work, study and challenging treatment decisions

Reflections on a life with severe haemophilia. Part 3: Work, study and challenging treatment decisions

In the third part of our conversation, Terence O’Rourke looks back on his young adulthood in the late 1950s and early 1960s, starting work in an architect’s office and becoming a student.  This was an...

15 Mai 202512min

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