Ask The Expert Presents Hemophilia on Balance

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 disorders community, and the work that she's doing to make an impact.

NotOk app: https://www.notokapp.com/

Research Articles:

Journal of Blood Medicine: Sue duTreil: Physical and psychosocial challenges in adult hemophilia patients with inhibitors https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4114907/

Haemophilia: Iannone M, Pennick L, Tom A, Cui H, Gilbert M, Weihs K, Stopeck AT: Prevalence of depression in adults with haemophilia. https://www.ncbi.nlm.nih.gov/pubmed/22642565

HERO Study: http://www.herostudy.org/

Suicide Prevention Hotline: 1-800-273-TALK (8255) https://suicidepreventionlifeline.org/

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

Have a bleeding disorders-related question you'd like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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 on Episode 16 of 'Ask the Expert' is Tracy Mann, a registered dietician and founder of Everyday Nutrition, LLC, who shares with us some easy and helpful ways to eat and feel better!

Everyday Nutrition, LLC.

https://www.everydaynutritionllc.com/

Choose my Plate: Guide to helping you eat a more balanced diet.

https://www.choosemyplate.gov/MyPlate

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

Have a bleeding disorders-related question you'd like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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 individuals around the country to help them navigate the challenge adoption system. We explore her personal journey through adoption and learn about what the overall adoption process looks like. We also touch on the unique challenges this presents when the adopted child has a chronic medical condition.

To contact Shari, please visit the website below.

https://www.hfmich.org/what-we-do-adoption/

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

Have a bleeding disorders-related question you'd like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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 disorders, how that has evolved in the decades since prophylactic treatment has become more common and what some of the new research shows in the bleeding disorders community. Episode 14, our physical therapy episode of the podcast features special guest Sharon Funk. Sharon Funk has been working as a physical therapist with the University of Colorado Hemophilia and Thrombosis Center for 41 years and has been a pioneer in the field of physical therapy and bleeding disorders.

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

Have a bleeding disorders-related question you'd like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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 Center, who helps us get a better understanding of what gene therapy is and where the current technology stands. Welcome to Episode 13 - or our Gene Therapy Episode - of the Ask The Expert Podcast!

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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 can be advocates. Welcome to Episode 12 - or our Community Advocates Episode - of the Ask The Expert Podcast!

Follow the link below and click the 'Receive our Newsletter' link to receive updates regarding healthcare updates referenced by Rich Pezzillo

http://www.hemophiliafed.org/advocacy/

Registration for the National Hemophilia Foundation's Washington Days:

https://www.hemophilia.org/Events-Educational-Programs/Washington-Days

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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 and inhibitors be thinking and asking their clinicians about? That's what we're here to discuss with this month's guest, Dr. Guy Young. Welcome to Episode 11 - or our Inhibitors and New Therapies Episode - of the Ask The Expert Podcast!

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.

Have a bleeding disorders-related question you'd like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

Link to Guy Young Interview Transcript

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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 Episode 10 - or, our Bleeding Disorders Across The Globe Episode - of the Ask The Expert Podcast!

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.

Have a bleeding disorders-related question you'd like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

LA Kelley Communications

Save One Life

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

"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 Podcast!

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.

Have a bleeding disorders-related question you'd like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

Check out more of our podcasts on BloodStream Media

Check out the GutMonkey website HERE

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 Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.

Have a bleeding disorders-related question you'd like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)