#BeyondHAE Youth Produced Podcast

#BeyondHAE Youth Produced Podcast

By US Hereditary Angioedema Ass.
The BeyondHAE Podcast is a series dedicated to serving young people affected by Hereditary Angioedema. Hear from a different host each episode as they share stories of perseverance, activism, and support. We hope that you find strength in listening to stories from HAEA community members. Everyone has a story and this podcast series is just that, an opportunity for young people affected by HAE to share their unique stories with you!

Visit www.haea.org for Hereditary Angioedema support, information and resources.
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#BeyondHAE: Back to School Tips with the HAEA Youth Leadership Council
This special BONUS episode of the #BeyondHAE podcast is a roundtable discussion with the HAEA Youth Leadership Council. Hear from members of the HAEA Youth community as they share some of their back to school tips and tricks. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
08:06
July 29, 2020
#BeyondHAE: Advocating for yourself at school (Gabriela P.)
This episode of the #BeyondHAE Podcast hosted by Gabriela who talks about why it is important to speak up for yourself at school. While it’s not always easy to talk to the administration at school about your HAE, it’s important. If you'd like more information about 504 plans, here is the link that is referenced in Gabriela's episode: https://www.understood.org/en/school-learning/special-services/504-plan/7-steps-to-getting-a-50 4-plan-for-your-child This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
08:14
July 29, 2020
#BeyondHAE: Independence and Self-Administration (Sophia)
Episode 11 of the #BeyondHAE podcast is hosted by 16 year old Sophia, from Connecticut. This episode is all about Sophia’s road to independence and control over her HAE attacks. She talks about how self-administration has contributed to feeling confident and managed, and how finding the right medication has impacted her HAE story. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
05:21
July 1, 2020
#BeyondHAE: Travel Tips (Kyleigh)
This episode is hosted by 18 year old Kyleigh, from Texas. Kyleigh’s episode is all about travel tips to make traveling smooth and easy for people with HAE.. Although many of us might not be traveling at this time, it’s important to be prepared when you leave home for any amount of time. Tune into Kyleigh’s episode to learn more about how you can prepare if you must travel. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
05:13
June 25, 2020
#BeyondHAE: Interview with my Mom (Carlie)
Episode 10 is hosted by Carlie from Louisiana. In this episode Carlie interviews her mom Mary, and they talk about everything from how they support each other to navigating relationships and friendships. Carlie and Mary provide some tips to support young people in relationship building with peers.  This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
07:23
June 3, 2020
#BeyondHAE: The Impact of COVID-19 on our lives and our HAE (HAEA Youth & HAEi Youngsters Collaboration)
BONUS Episode! The HAEA Youth and the HAEi Youngsters have come together to collaborate on this special episode of the #BeyondHAE Podcast. This roundtable discussion is all about the impact that COVID-19 (Coronavirus) has had on the lives of young people with HAE around the world. Hear from young adults living in South Africa, Greece, and the US about how their lives have been impacted by this unprecedented international crisis. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
22:15
May 22, 2020
#BeyondHAE: Navigating Friendships and HAE (Jasmeen)
Episode 9 is hosted by Jasmeen, from New Mexico. This episode is all about navigating friendships. Jasmeen talks about her experience telling her peers about HAE and how sometimes this experience unveiled false friends. But there are lessons to learn with every experience and Jasmeen shares how this experience has taught her important lessons along the way. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
04:37
May 18, 2020
#BeyondHAE: Anxiety and HAE (Jack)
Episode 8 of the #BeyondHAE Podcast is hosted by 14-year-old Jack from New Jersey. Jack’s HAE attacks have always been pretty manageable until he experienced his first throat swell and began to feel overwhelming anxiety as a result. Listen to May’s #BeyondHAE podcast episode to hear Jack’s story and how he learned to overcome his anxiety. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
04:05
April 29, 2020
#BeyondHAE: How I Advocate for HAE (Stephen)
Episode 7 is hosted by Stephen, from Ohio. Stephen’s dad and his little sister Abby both have HAE; and although Abby has yet to have her first attack, Stephen has realized that he can help her have a brighter future by participating in HAE advocacy. In this episode of the #BeyondHAE podcast, Stephen talks about a few of the fun ways that he raises awareness about HAE and how he has become a proud HAE advocate. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
04:49
March 30, 2020
#BeyondHAE: My role as a caregiver to my little sister (Ava)
Episode 6 is hosted by Ava, who is a caregiver to her little sister who has HAE. In this episode, Ava provides insight into how she has supported her little sister during her HAE journey. While coping with a family member with a chronic health condition isn't easy, there are often times important lessons that are learned along the way. It’s important to remember that undiagnosed family members (caregivers) often play a big role in supporting their diagnosed family member and that HAE truly affects the whole family.  This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
04:19
February 21, 2020
#BeyondHAE: Staying Active Helped Me Push Through Challenges (Luke)
Episode 5 is hosted by Luke. In this episode, Luke talks about his fear of needles and how he found the strength to overcome his fear so that he could be proactive in treating his HAE attacks. Luke credits the strength he found to his involvement in sports and his desire to stay active despite his frequent swells. We hope that you too can find strength in Luke's story, knowing that you are not alone.  This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
06:46
January 30, 2020
#BeyondHAE: When There's a Will, There IS a Way (Maddie)
Episode 4 is hosted by 16 year old Maddie. In this episode, Maddie talks about what it's like to live with multiple diagnosis' and how she copes with the pain to pursue the things that she loves most.  This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
04:26
December 19, 2019
#BeyondHAE: Creating a Strong Support System (Noah)
Noah is your host for Episode 3. In this episode of the #BeyondHAE Podcast, Noah talks about the importance of creating a strong support system for you and the management of your HAE. From family and friends to teachers and coaches, different people in your life can play a large role in your HAE support system. Noah talked with his close friend Greg about how friends can offer their support. Greg talks about what it means to him to support Noah. Join Noah as he shares his personal story with you and offers tips for you to better manage your HAE. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
04:34
December 11, 2019
#BeyondHAE: We're in Washington, DC for HAEA's Capitol Hill Day
Episode 2 was recorded live in Washington, DC during the Hereditary Angioedema Association's Capitol Hill Day. This is a day when over 90 HAE patients and caregivers from across the nation come together in our nation’s capitol and meet with their congressional representatives to advocate for continuous support for HAE patients and their needs. Hear from hosts, Jack, Ava, and Stephen as they talk about what it means to be a young person participating in this event and advocating to their congressional leader. Each host shares a story about their experience and talks about why advocating is so important to our community. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
03:29
November 1, 2019
#BeyondHAE: What is HAE
This is the first episode of the #BeyondHAE Podcast series! Hear from episode hosts, Noah, Carlie, and Luke as they welcome you to our series with an overview of what Hereditary Angioedema is. Each host shares a deeply personal HAE memory and how that memory has impacted the person they are today. We hope that these stories help other young people with HAE realize that they are not alone.  This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
05:17
November 1, 2019