Hemostories Podcast

Hosted By: Holly Olsen   Guest: Isidro Montero of Costa Rica   In this short episode of HemoStories, Holly interviews Isidro Montero in San Jose, Costa Rica. Isidro is the secretary of the Hemophilia Association of Costa Rica. The mission of the association is “to ensure better health and quality of life for Costa Rican people with hemophilia”. Listen as Isidro shares his involvement and experiences with the bleeding disorder community in Costa Rica.   If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing to the podcast, following us on social media (@hemohelper), and liking our HemoHelper Facebook Page.    Special thanks to Carole Kelly for editing, and to Mason Morris from SLC, UT for writing the theme song, “Just Smile,” which was written as an optimistic reminder that there is hope for a cure and a bright future in the hemophilia world.

Hosted By: Holly Olsen Guests: Marisol de Monteroso and Dr Faviola Valbert Join Holly as she interviews Marisol de Monterosa, President of the Hemophilia Association in Guatemala, and Dr Faviola Valbert, a hematologist in Guatemala. Marisol tells us of her unexpected introduction to hemophilia when her son was diagnosed at the age of three; her feelings of isolation; her founding of the Hemophilia Association in Guatemala; and work she does for hemophiliacs in her country. Dr Faviola Valbert shares the sad realities of having hemophilia in Guatemala where medical issues are only the beginning of the problem. Politics, finances and even a diagnosis are major limiting factors to the health and well-being of those with bleeding disorders. Together Marisol and Dr Valbert tell about the Center that brought them together and the effort they are making to make life better for those in Guatemala with hemophilia. If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing,  follo

Haydée Benoit de García, of the Dominican Republic, used her son’s diagnosis with Severe Hemophilia A as motivation to empower her entire country with knowledge and information about bleeding disorders. From what had once been an isolating experience for the hundreds in the Dominican Republic with Hemophilia (diagnosed or not), came a community filled with hope and optimism. Listen to her story to learn about the partnership of hemophiliacs, parents, and medical providers within the Dominican Republic with those outside the country, including the World Hemophilia Foundation. United, they support those in the Dominican Republic with donations of time, money, education, supplies and product. It’s a beautiful team which was made possible by the efforts of one woman motivated by the desire to help and to improve the lives of others. If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing,  following us on social media (@hemohelper), and liking our HemoHelper Facebook Pag

In this episode of HemoStories, Holly Olsen speaks with Miguel Izquierdo in Mexico City. Himself a hemophiliac, Miguel Izquierdo understands the challenges of diagnosis and treatment. As the president of the Directive Board of the Mexican Federation of Hemophilia, he advocates for proper health care for thousands of hemophiliacs in Mexico. The group deals with insurance complications, cultural stigma, and maintaining quality of life.

Hosted by: Josie Olsen  Guest: Rick Kelly Join Josie Olsen and her husband, Rick Kelly, in this HemoStories episode as they recap new HemoHelper research which debuted at the 2016 World Federation of Hemophilia World Congress in Orlando, Florida last month. At this event Rick presented a poster about his research on the relationship between healthcare infrastructure within a country and the measured prevalence of Hemophilia A. Rick gives a description of his research and future research opportunities. Listeners will also learn the differences between various hemophilia-related conferences (such as NHF and WFH) and reasons you may want to attend. To access the data on Rick’s research, as well as an interactive workbook, go to HemoHelper.com/data If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing,  following us on social media (@hemohelper), and liking our HemoHelper Facebook Page.  Special thanks to Carole Kelly for editing, and to Mason Morris from SLC, UT for w

In this episode of the HemoStories Podcast, Josie interviews  Linda Wright, a Factor 1 deficient member of the bleeding disorders community. Linda has afibrinogenemia, which means her liver manufactures no fibrinogen. Josie first became acquainted with Linda when searching online for others with afibrinogenemia like her son, Forrest.  This is the first in a series of interviews covering the whole spectrum of bleeding disorders. Linda’s long history and extensive involvement in the bleeding disorders community will be as interesting to listen to as her 67 year personal experience with afibrinogenemia.  If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing,  following us on social media (@hemohelper), and liking our HemoHelper Facebook Page.  Special thanks to Caroleen Kelly for editing, and to Mason Morris from SLC, UT for writing the theme song, “Just Smile,” which was written as an optimistic reminder that there is hope for a cure and a bright future in the hemoph

Hosted by: Rick Kelly Guest: Rich Pezzillo  In this episode of the HemoStories Podcast, Rick interviews the new Executive Director of the New England Hemophilia Association, Rich Pezzillo. Prior to his role at NEHA, Rich was the Communications Director at Hemophilia Federation of America and a staffer in the United States Senate. Rich resides in Rhode Island and has a family history with hemophilia that has affected his life and the lives of his family members. Rick and Rich discuss lessons learned growing up with hemophilia, plans for the New England Hemophilia Association and the future of hemophilia. If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing,  following us on social media (@hemohelper), and liking our HemoHelper Facebook Page.  Special thanks to Caroleen Kelly for editing, and to Mason Morris from SLC, UT for writing the theme song, “Just Smile,” which was written as an optimistic reminder that there is hope for a cure and a bright future in the hemo

Hosted By: Joslyn Olsen Guest: Darlene Shelton     Darlene Shelton is a woman of action. When she learned that emergency responders were constrained by law from administering lifesaving factor to her grandson, she didn't just take it as another barrier in the life of a hemophiliac. Instead, Darlene began a campaign called "Danny's Dose" which took on the task of changing the law in their home state. She accomplished that goal within one year. Today in the state of Missouri, all people with rare diseases are able to have their lifesaving medications administered by emergency responders.    Listen to Darlene's inspiring story and learn how you can assist in making lifesaving changes to emergency responder laws in your state, too.    If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing,  following us on social media (@hemohelper), and liking our HemoHelper Facebook Page.  Special thanks to Caroleen Kelly for editing, and to Mason Morris from SLC, UT for writing the t

In this HemoStories episode, Joslyn interviews Matthew Tache and Billy Conde Goldman, the founders of Blood Vibrations, an “ongoing grassroots project of music created by people in the bleeding disorders community.”  Both Billy and Matthew have dealt with hemophilia throughout their lives.   In this interview they share their personal stories as well as the goals of the Blood Vibrations. Blood Vibrations offers a creative outlet for those with bleeding disorders to share their experience through music and voice. Downloads and information about the project are available at their website, bloodvibrations.bandcamp.com. Blood Vibrations has a continued presence at national bleeding disorder conferences. Matt and Billy share a bright hope for the future and optimism for worldwide improvement for those with bleeding disorders.

Hosted by: Joslyn Olsen  Guest: Maria DaSilva In this episode of the HemoStories Podcast, Josie interviews her good friend and HemoHelper advisory board member, Maria Da Silva.  Born and raised in Brazil, Maria now lives in Connecticut, and has a deep and broad history with hemophilia that has affected her life and the lives of extended family members. Knowing that she was a carrier since the time she was little, losing her father to AIDS in 1988, and later having her own son with hemophilia, Maria's story is one of heartache, loss, love, and hope. Together, Maria and Joslyn inform listeners of the complications that have frequently accompanied those who live with hemophilia. They also discuss the difficulty of diagnosis and treatment in developing countries. Maria’s familiarity with hemophilia inspires her to appreciate medical progress and motivates her to help others. If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing,  following us on social media (@hemohelp

Hosted by: Joslyn Olsen Guest: Agnes Kisakye  In this HemoStories episode, Joslyn interviews Agnes Kisakye, the executive secretary of the Haemophilia Foundation of Uganda. After helping her brother's son discover his bleeding disorder after a series of unfortunate bleeds, Agnes, a social worker, began seeking out other hemophiliacs in her country and helping them.  Uganda has a population of approximately 38 million people, but only has 81 diagnosed bleeding disorder patients. That doesn't mean there aren't more out there (likely thousands, in fact), but in this developing country there are limited resources and a general lack of awareness regarding bleeding disorders.   HemoHelper has been collecting donations in an effort to send medical identification pendants for every diagnosed hemophiliac in Uganda, in addition to hundreds of medical supplies. To support the cause, click here. If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing,  following us on social med

In this HemoStories episode, Joslyn interviews Ohio native, Timothy Wilcox in a stairwell while attending NHF’s 67th Annual Meeting in Dallas, Texas.  Together they discuss Timothy’s personal experiences of being both a diabetic and a moderate hemophiliac. Despite being raised with many close family members affected by hemophilia (brothers, cousins, uncles), treatment was especially difficult for Timothy because he comes from a family of Jehovah's Witnesses, who typically do not believe in blood transfusions of any kind. This episode also helps the listener gain insight on what it was like to have hemophilia before prophylaxis and what it was like to live during HIV/Hepatitis outbreak of the 1980s.

Hosted by: Joslyn OlsenGuests: 2015 Blood Work Participants In this HemoStories episode, Josie has the unique opportunity of interviewing four distinguished artists and participants from the 2015 Blood Work exhibit at the National Hemophilia Foundation's 67th Annual Meeting in Dallas, Texas.    Artists interviewed in this episode include Chinedu Felix Osuchukwu, Patrick James Lynch, Patrick Mancini, and Tim Andrews. They discuss and describe their submissions for the listeners, and openly share the inspirations and motivations behind their work.  Blood Work is a program of FOLX, and celebrates diverse backgrounds in bleeding disorders. FOLX wishes to support additional versions of success from arts and music to activism and ingenuity in order to remain diligently inclusive of individualized approaches to living with a bleeding disorder.  All artists and artwork can be found at: www.folxfolx.org

In this HemoStories episode, Joslyn interviews FOLX founder, Justin Levesque in an outdoor setting while attending NHF's 67th Annual Meeting in Dallas, Texas.  Together they discuss Justin's personal experiences of being a hemophiliac affected by inhibitors, the many projects/organizations he contributes to, and his hopes for the future of the community. Justin specializes in the critical analysis of images and their impact on social norms and community expectations. He lives in Portland, Maine and runs his own design studio, Shop Geometry. Justin has volunteered as a camp counselor at NEHA Family Camp for 5 years, mentors LGBTQ youth, and now serves as Creative Director for the Hemophilia Alliance of Maine. This episode helps the listener understand more about visual literacy, how to participate in the process of reclaiming the bleeding disorder community's visual culture, and what events to look forward to in the upcoming year. Justin's website is: www.folxfolx.org

In part 2 of this HemoStories episode, Holly continues interviewing Preeta Varkey, the mother of an 8 year old son with severe hemophilia and inhibitors. They are Indian expatriates living in Bahrain.  Preeta shares the vulnerable and difficult lifestyle of living outside of her native country while parenting a child with a complex medical condition. The discussion covers the cost of treating her son, the availability of factor, educating her son outside of public schooling, and Preeta's hopes for the future.  "Health should be the first priority [of a country] for the citizens... I feel that affordable treatment should be the top most priority today and it should be made available to all, no matter which country you belong to." 

In part 1 of this HemoStories episode, Holly interviews Preeta Varkey, mother of an 8 year old son with severe hemophilia and inhibitors. They are Indian expatriates living in Bahrain.  Preeta shares the vulnerable and difficult lifestyle of living outside of her native country while parenting a child with a complex medical condition. “I feel that affordable treatment should be the top most priority today and it should be made available to all, no matter which country you belong to. Manufacturers have a very big role in making things better. They should seriously think about the rest of 75% of the world with hemophilia too and try to reduce the price so that it becomes easily available/accessible to all.”             

In this HemoStories episode, Josie interviews Michael Bishop, an optimistic 22 year old from Findlay, Ohio with a fascinating story. Although he lives with Hemophilia B, an inhibitor, and an allergy, Michael has found plenty of ways to stay positive throughout the years. He's a student, a writer, and a musician, who often found creativity as a crucial outlet while he was recovering from bleeds. Of course he says video games helped too. Michael takes us back to when he first realized he had hemophilia, explains to our listeners what an inhibitor is, shares key hemo-related experiences from his childhood, and talks to us about the importance of connecting through social media within the hemophilia community. 

This HemoStories episode highlights excerpts from the speech given by Megan Adediran, the Executive Director of the Haemophilia Foundation of Nigeria, at NHF's annual meeting called "Overcoming the Odds." It is the second segment of our look at hemophilia in Nigeria. It will help listeners to understand how hemophilia is viewed and treated, and the measures that Megan's organization is taking to educate people of this country.  In this episode you'll also hear more about the HemoHelper outreach taking place in April, 2015, and a brief overview of World Hemophilia Day.  

In this episode of HemoStories, Joslyn interviews Megan Adediran, the Executive Director of the Haemophilia Foundation of Nigeria. Megan walks us through her journey from an unknowing carrier to becoming a hemo-mom, and how that led to her becoming the founder and president of the country's only hemophilia organization. 

In this episode of HemoStories, Josie interviews Factor Support Network’s Tina McMullen about her job as a client services representative and her experiences as a hemo-mom. Tina, from Birdsboro, Pennsylvania, opens up about her son’s rocky road to a diagnosis, the way that she and her husband learned to incorporate the disorder into their daily life, and how she handled child abuse allegations in the hospital. She shares their history, their feelings, and even offers advice to anyone going through the same thing.