Gynaecological Issues, Finding Solutions and Clinical Trials: A Conversation with Nicki
Release Date: 10/21/2022
Finally Getting Diagnosed at 46, Impacts on Quality of Life, and Failings of Medical Physicians: A Conversation with Dani
Sister, You're Not Alone
Dani, at the age of 46 finally recieved her diagnosis of VWD Type 1. After years of struggling with bleeding symptoms, several hospitalizations and traumatic incidents, she was able to put a name and a reason to what had been causing so many of the problems she'd faced over the years. Listen in as she describes her diagnosis story, the impact that it's had on her life and our discussion of physician's failure to recognize the signs of a bleeding disorder. Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license....
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Growing Up with Factor 1 (Fibrinogen) Deficiency, Surviving Hep C, and Endometrial Cancer: A Conversation with Angel
Sister, You're Not Alone
Angel grew up knowing she had Factor 1 Deficiency, having been diagnosed at a young age. Overall her symptoms have been mild to moderate, but like many women her journey has been a roller coaster. Listen in as we discuss her treatment journey from Cryoprecipitate to now being on prophylaxis with a factor concentrate, how she contracted Hepatitis C and successfully cleared it, and her experience of finding out she had endometrial cancer. She will always speak for awareness of investigating any unusual female symptoms...as she found out that symptoms and a bleeding disorder aren't always...
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Clinical Research for the Advancement of Women's Care: A Conversation with Dr. Michelle Sholzberg
Sister, You're Not Alone
In today's episode I had the pleasure of speaking with my Hematologist, Dr. Michelle Sholzberg. She is a clinician-scientist with a focus on coagulation, the Division Head of Hematology-Oncology and the Medical Director of the Coagulation Laboratory at St. Michael's Hospital. Listen in as we discuss her current research projects that she is focused on as well as a review and discussion of current treatment options used in those with all types of VWD. For more information feel free to contact the Comprehensive Hemophilia Care Centre at St. Michael's Hospital in Toronto. ...
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Gynaecological Issues, Finding Solutions and Clinical Trials: A Conversation with Nicki
Sister, You're Not Alone
Nicki had been struggling with ovarian cysts for years, causing her to be in and out of the hospital, leaving her feeling that her issues were being dismissed. Until finally her symptoms and problems led to her diagnosis of VWD Type 1. While her diagnosis was later into her 20's she's felt it has been life changing! Listen in as she tells her story, what led to her diagnosis and the importance of participating in clinical trials to help advance healthcare for women. Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license....
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Getting a Diagnosis, Family Guilt, and Navigating Dating & Relationships, As a Woman with a Bleeding Disorder: A Conversation with Lauren
Sister, You're Not Alone
After living the life where she was always told that it was normal to bleed heavy, she finally got her diagnosis at age 24. Listen in as she explains what led to her diagnosis, the impact this has had on her and the life of her family, and our discussion of how having a bleeding disorder affects dating and relationships. Feel free to connect with Lauren through her facebook page Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721
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Raising a Child with VWD Type 3, a Mother's Perspective: A Conversation with Carly
Sister, You're Not Alone
Carly is the mom of a 3 year old little girl diagnosed with VWD Type 3. She lives in the UK and together with her husband, they are raising their 2 daughters. Listen in as Carly shares their family story and discusses everything from diagnosis, discovering family history, to the benefits of moving to prophylaxis and the importance of communication...with your partner, family, and others in the community. Feel free to connect with Carly through her facebook page . And for further information on bleeding disorders be sure to check out the Haemophilia Society in the UK Music...
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The Importance of Doing Your Research, Making Connections and Learning to Advocate...A Mother's Perspective: A Conversation with Elena
Sister, You're Not Alone
Elena, a mother of a young girl diagnosed with VWD Type 3 severe has become passionate about spreading awareness and sharing information via social media with others. She and her husband live in Paris, France and their daughter is now one of the youngest patients to be using Hemlibra to help treat her bleeding disorder. Listen in as we discuss the importance of seeking out information, not being afraid to ask and question your healthcare providers, struggling and managing with PTSD, and the benefits of finding community for support. Be sure to follow @zaichee and feel free to connect...
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Living with VWD Type 3, Family Planning, New Treatment Options, and Impacts on Mental Health: A Conversation with Michelle
Sister, You're Not Alone
Diagnosed with Type 3 von Willebrand Disease as a baby, Michelle has grown up and navigated various life stages with this disorder. Now a mother of 2, listen in as we discuss how Michelle has managed her bleeding disorder sypmtoms from childhood through to pregnancy and delivery. As well as the exciting, new treatment option that she is beginning, and the importance of addressing mental health issues that can stem from dealing with a chronic disorder and medical trauma. Feel free to reach out and connect to Michelle on her instagram page @meesh_igan Here is a great list of resources in the US...
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Having a Child with VWD Type 3, a Mothers Perspective: A Conversation with Richelle
Sister, You're Not Alone
I met Richelle through Instagram and the page she's created to raise awareness about VWD after the diagnosis of her daughter with Type 3 von Willebrands. Listen in as Richelle shares their family story and discusses topics from diagnosis to ports to the value of social media for finding that community, infomation and support. Be sure to follow @rallyforrielynn and feel free to connect with Richelle through that page. Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721
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Self Advocacy and Employee Rights, the Challenges Faced by Women with Bleeding Disorders: A Conversation with Fabiola
Sister, You're Not Alone
Having struggled with debilitating periods for years, listen in as Fabiola shares her story of how she's overcome workplace challenges through self advocacy to allow her to now feel confident and empowered in managing her career and her bleeding disorder! Be sure to follow @vonwillebrandpuertorrican and feel free to connect with Fabiola through that page. And here are the links mentioned in today's episode: Puertorrican Association for Hemophilia and Blood Disorders Helping forward financial assistance program HFA HFA learning central - Employments Rights Course Music - reCreation by...
info_outlineNicki had been struggling with ovarian cysts for years, causing her to be in and out of the hospital, leaving her feeling that her issues were being dismissed. Until finally her symptoms and problems led to her diagnosis of VWD Type 1. While her diagnosis was later into her 20's she's felt it has been life changing! Listen in as she tells her story, what led to her diagnosis and the importance of participating in clinical trials to help advance healthcare for women.
Music - reCreation by airtone (c) copyright 2019 Licensed under a Creative Commons Attribution (3.0) license. http://dig.ccmixter.org/files/airtone/59721