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Ep. 20: Women with Bleeding Disorders - w/ Tammy Davenport - October 29, 2018

Imagine having all the symptoms, and even the diagnosis of hemophilia, but you constantly hear that it’s impossible for you to have the condition. You undergo surgery without having factor available, suffer from bleeds and are placed in life-threatening situations, despite the fact that your factor levels have consistently shown that you have hemophilia. While this sounds like an outrageous scenario, most women with hemophilia have lived this exact same story. On our “Women with Bleeding...


Ep. 19: The Model Volunteer - w/ Maryann May - September 24, 2018

Non-profit organizations couldn’t function without the critical work of VOLUNTEERS. Whether on the national or local level, volunteers help communities CONNECT. Volunteers serve on boards of directors, chair committees to organize fundraisers and events, stuff mailers to potential donors, and even set up tables and chairs for events. They do it all! That’s why the mighty VOLUNTEER is the focus of Episode 19 of the Ask the Expert podcast. Disclaimer: The content contained within Ask The...


Ep. 18: Career Counselor Episode - w/ Don Molter - August 27, 2018

Summer is already coming to a close and for many families that means their kids are heading back to school or off to college. It’s an exciting time, but what if you aren’t ready for college or you don’t feel like that’s the right path for you? How do you go about finding a career that fits your life with a bleeding disorder and how do you approach the challenges of applying and interviewing for those jobs? That’s what we are going to discuss on our Career Counselor episode of Ask the Expert...


Ep. 17: Mental Health - w/ Debbie de la Riva - July 23, 2018

Mental illness in the bleeding disorders community is a challenging topic to discuss, but given that approximately one-third of people with a chronic illness experience symptoms of depression, it’s clearly a topic in need of more attention. This month’s guest is Debbie de le Riva, community advocate and social worker. She joins host Chris Bombardier and guest co-host Patrick James Lynch for an open and honest discussion about depression, mental illness, and suicide prevention in the bleeding...


Ep. 16: Nutrition - w/ Tracy Mann - June 25, 2018

One of the easiest ways to keep our bodies healthy on a day to day basis is by eating well, but it’s also one of the hardest commitments to make. After a long hard day of work or school, it’s so easy to swing into a fast food restaurant or pop in a frozen pizza, even when we know we should go for something healthier. On today's podcast we will be exploring some of the myths around nutrition, tips for how to make healthy eating easier, and what effect food has on bleeding disorders. Our guest...


Ep. 15: Adoption - w/ Shari Luckey - May 28, 2018

In many developing countries, children that are born with chronic medical conditions are placed in orphanages. With limited hope for care in these situations one of the best hopes for these children is to be adopted. In this month’s Ask The Expert episode, we visit with Shari Luckey, the Adoption Advocacy and Outreach Coordinator for the Hemophilia Foundation of Michigan. Shari not only has personal experience adopting a child with hemophilia from a developing country but also works with...


Ep. 14: Physical Therapy Episode - w/ Sharon Funk - April 22, 2018

There are many different healthcare providers that make up the the comprehensive care model at hemophilia treatment centers around the United States and much of the developed world. Physicians, nurses, social workers, physical therapists and many other healthcare professionals are all crucial team members in this model and can help individuals throughout their lifetime. Today for ‘Ask the Expert’, we will be focusing on the role of physical therapists in the care of individuals with bleeding...


Ep. 13: Gene Therapy Episode - w/ Dr. Marilyn Manco-Johnson - March 26, 2018

The concept of gene therapy has been floating around the hemophilia community for decades, but with recent success in clinical trials, we appear to be getting closer to having an FDA approved treatment. In this episode, we focus on understanding terminology and types of gene therapy, potential benefits and pitfalls, and the role of factor in a gene therapy world. Our expert for this month’s episode is Dr. Marilyn Manco-Johnson, Director of the University of Colorado Hemophilia and Thrombosis...


Ep. 12: Community Advocates - w/ Rich Pezzillo - February 26, 2018

Advocacy has long been a hot topic in the bleeding disorders community, but beyond office visits with state and federal legislators, what does it actually entail? If you have ever wondered about how you can become or grow as an advocate, this episode is for you! In this month’s episode of the Ask The Expert Podcast we catch up with Rich Pezzillo, Executive Director of the New England Hemophilia Association (NEHA) and long-time community advocate, who speaks about the many different ways we...


Ep. 11: Inhibitors and New Therapies - w/ Dr. Guy Young - January 22, 2018

The management of inhibitors continues to be one of the greatest challenges facing researchers, clinicians, and patients with hemophilia. Thankfully we seem to have taken a giant step forward vis-a-vie the introduction of Hemlibra, the first and only subcutaneous treatment option for patients of all ages who have severe hemophilia A and inhibitors. But what exactly is this form of non-factor replacement therapy? How does it work? And what should patients and families impacted by hemophilia...


Ep. 10: Across The Globe - w/ Laurie Kelley - December 25, 2017

For the last 27 years, Laurie Kelley has dedicated herself to educating and improving the lives of families impacted by hemophilia, hemophilia and inhibitors, and von willebrand disease, both here in the United States and internationally throughout the developing world. So as we say goodbye to 2017 and hello to 2018, what are some of the major considerations for our community both domestically and global? That’s what we’re here to discuss with this month’s guest, Laurie Kelley. Welcome to...


Ep. 9: The Great Outdoors- w/ Pat Torrey - November 27, 2017

“I can’t do that.” “That’s not for me.” “I’m not able to do that.” Thinking about the outdoors and outdoor activities can be intimidating for people living with a bleeding disorder. But should they be? Are the outdoors and experiential education in the outdoors really off-limits to people with bleeding disorders? That’s what we’re here discuss with this month’s guest, GutMonkey Founder and CEO, Pat Torrey, on Episode 9 - or, our Outdoor Education Episode - of The Ask The Expert...


Ep. 8: Preparing for the Holidays - w/ Eric Iglewski - October 23, 2017

Food, family, food, travel, more food, money, more food still- the holidays can be a really stressful time! On this episode, social worker Eric Iglewski from the Mary M. Gooley Hemophilia Center in Rochester, New York joins Ask The Expert to talk through important considerations for people with bleeding disorders to keep in mind as we rapidly approach the wonderful chaos that is the holiday season! Welcome to Episode 8 of the Ask The Expert podcast! Disclaimer: The content contained within...


Ep. 7: Aging with Hemophilia- w/ Randy Curtis - September 25, 2017

In this episode Randy Curtis, the Hemophilia Council of California’s Board President and longtime community activist, joins Ask The Expert to answer questions on aging with hemophilia, and the how he and peers in the Baby Boomer and Generation-X populations view this historic point in treatment history. We address that, and more, on Episode 7 of BloodStream Media’s Ask The Expert podcast series! Disclaimer: The content contained within Ask The Expert is for informational purposes only....


Ep. 6: Back to School - w/ Carrie Koenig - August 28, 2017

In this episode Carrie Koenig, the Hemophilia Federation of America’s (HFA) Families Program Manager, identifies the most important considerations for parents and families preparing for back-to-school season. What should parents of children with bleeding disorders be thinking about? What resources are available to help parents prepare? How active should kids be in advocating for themselves with teachers, administrators, and classmates? We address these questions and many more on Episode 6 of...


Ep. 5: ISTH Recap - w/ Dr. Steven Pipe - July 24, 2017

In this episode, Dr. Steven Pipe, a pediatric hematologist out of the University of Michigan who is also the chair of the National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC) discusses the major takeaways from the International Society of Thrombosis and Hemostasis’ (ISTH) 2017 Congress, which took place this July in Berlin, Germany. Dr. Pipe shares the latest updates on non-factor replacement therapies, gene therapy, and more on Episode 5 of BloodStream Media’s...


Ep. 4: Healthcare Legislation and Advocacy - w/ Katie Verb - June 27, 2017

In this episode, Katie Verb, the Director of Policy and Government Relations for the Hemophilia Federation of America, answers questions on health care legislation, advocacy, and the extraordinarily-troubling Better Care Reconciliation Act (BCRA) that has been drafted by Senate Republicans in an unprecedented and lightning-fast manner. What could the BCRA mean for our community and Americans at large, and what should we be doing about it? Find out on Episode 4 of BloodStream Media’s Ask The...


Ep. 3: Women with Bleeding Disorders - w/ Dr. Robert Sidonio - May 22, 2017

In this episode Dr. Robert Sidonio, an Assistant Clinical Professor of Pediatrics at Emory University Hospital and the Clinical Director of Hemostasis/Thrombosis at the Children’s Hospital of Atlanta, answers questions on and about women with bleeding disorders. Dr. Sidonio is a leading expert in the treatment and management of women with bleeding disorders, and addresses topics such as common challenges, research gaps, and encouraging trends in Episode 3 of BloodStream Media’s Ask The...


Ep. 2: Questions for your Pediatric Hematologist Part 2 - w/ Dr. Arash Mahajerin - February 27, 2017

In this episode, pediatric hematologist Dr. Arash Mahajerin is back to answer listener-submitted questions on the future of portacaths for kids with hemophilia, what to do when mysterious bruising or joint pain begins to show, and marijuana- is it a legitimate form of medication, or not? His answers to those questions, and more, on Episode 2 of BloodStream Media’s Ask The Expert podcast series! Disclaimer: The content contained within Ask The Expert is for informational purposes only....


Ep. 1: Questions for your Pediatric Hematologist - w/ Dr. Arash Mahajerin - January 30th, 2017

In this - our first! - episode, Dr. Arash Mahajerin, a pediatric hematologist at the Children's Hospital of Orange County (California) and Assistant Clinical Professor at the University of California, Irvine, answers listener-submitted questions about all things bleeding disorders in the first episode of BloodStream Media's Ask The Expert podcast series. Subscribe to Ask The Expert and check out BloodStream Media's other podcasts at Interested in learning more about...