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#BeyondHAE Youth Produced Podcast

#BeyondHAE Youth Produced Podcast

By US Hereditary Angioedema Ass.
The BeyondHAE Podcast is a series dedicated to amplifying the voices of young people affected by Hereditary Angioedema and raising awareness about the disease. 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: How I Support Team Jack (Ally)
Episode 29 is hosted by Ally whose younger brother, Jack has HAE. In this episode, Ally talks about how her and her family support Jack and his HAE by coming together to host fun events and activities. 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. Thank you to our sponsors BioCryst and Takeda.
03:40
June 30, 2021
#BeyondHAE: We are Caregivers (Ava)
Episode 28 is hosted by Ava who welcomes her mom, Sherry to talk about what it's like to care for and support Ava's younger sister Lillian who has HAE. There have been some challenging times, but together they have been there to support Lillian through her diagnosis, treatments, and management of her 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. Thank you to our sponsors BioCryst and Takeda.
06:17
June 1, 2021
#BeyondHAE: Understanding Anxiety (Carlie)
Many people with HAE experience anxiety. Episode 26 is hosted by Carlie who talks about managing and understanding anxiety while living with HAE, as well as letting listeners know they aren't alone in their struggles. 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. Thank you to our sponsors BioCryst and Takeda.
04:53
April 30, 2021
#BeyondHAE: Chat with my Mom: Managing Life's Changes (Sophie)
Episode 26 is hosted by Sophie and her mom, Melanie. This episode is about learning to manage changes in life while managing HAE. Life changes are inevitable and learning effective coping strategies is important to ensuring that you are able to navigate those changes while still effectively managing 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. Thank you to our sponsors BioCryst and Takeda.
12:09
April 5, 2021
#BeyondHAE: Modern HAE medication has allowed me to live #BeyondHAE (Sophia)
Episode 25 is hosted by Sophia who lives in Connecticut. Beyond her HAE, Sophia runs track and is passionate about improving her times and advancing in her sport. She talks about how modern HAE therapies and the successful management of her disease has resulted in her having the best year yet in track. Sophia is an incredible example of a young women who has not let her HAE hold her back from excelling in the sport she loves! 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. Thank you to our sponsors BioCryst and Takeda
07:34
March 2, 2021
#BeyondHAE: Interview With My College Roommate (ReyJeanne)
Episode 24 is hosted by ReyJeanne and her friends from college. They talk about supporting ReyJeanne through some of the challenges that she experienced in college. From learning how to give emergency medication, supporting you during stressful times, and knowing your emergency plan, friends can play a big part in supporting you on your HAE journey. Don't miss this amazing episode that provides a glimpse into what it's like to be in college while managing 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. Thank you to our sponsors BioCryst and Takeda.
12:15
February 1, 2021
#BeyondHAE: 5 Years Can Make a BIG Difference (Luke)
Episode 23 is by Luke. This episode is all about Luke's HAE journey. From diagnosis, getting access to medication, insurance denials to getting involved in the HAEA youth programs and making life long friendships. Now Luke is participating in a clinical trial, paving the way for advances in medication options for other people with HAE. Luke's story is all about overcoming challenges to achieve his goal of living life #BeyondHAE. 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. Thank you to our sponsors BioCryst and Takeda
04:41
December 30, 2020
#BeyondHAE: My Emergency Room Experiences (Jack)
Episode 22 is hosted by Jack from New Jersey. Jack talks about his many trips to the ER and shares some stories about his experiences there. ER trips can be stressful and emotionally draining, but advocating for yourself and your needs is an important lesson that can reduce unnecessary procedures and wait times. 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.
03:41
November 30, 2020
#BeyondHAE: HAE and Sports (Noah)
Noah is an athlete and in this episode, he talks about what he does to make sure that HAE doesn't stop him from participating in the sports he loves. 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.
05:06
October 30, 2020
#BeyondHAE: Talking to friends about HAE (HAEA YLC)
This episode is all about telling people in your life about your HAE. Hear from members of the HAEA Youth Leadership Council as they discuss everything from telling friends about HAE to coaches and teachers. Sometimes it's hard for our peers to understand, but other times, our friends surprise us with how supportive they can be. 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.
08:05
October 30, 2020
#BeyondHAE: Managing Stress (Ava)
Episode 19 is hosted by 10 year old Ava from California. Ava talks about the impact that stress has on her HAE attacks. She shares some strategies that she's learned over the years to cope with stress. 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.
05:46
October 1, 2020
#BeyondHAE: Art is my Therapy (Gabriela)
Episode 18 is hosted by Gabriela from California. Gabriela shares her personal HAE story and talks about how art has helped her get through difficult times. 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.
08:17
October 1, 2020
#BeyondHAE: Maddie's Story
This episode is hosted by Youth Leadership Council member and HAEA Social Media Intern, Maddie. In this episode, Maddie shares her HAE journey, from her diagnosis and many hospital visits, to becoming part of the HAEA Youth community and advocating for the HAE community on Capitol Hill. 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
August 31, 2020
#BeyondHAE: Being Different is Normal (Kobe)
This episode is hosted by Kobe from Georgia. Kobe asks the question, what does it mean to be normal? As a young person with a chronic disease, many of us understand that we are a little different from our peers. As Kobe describes in this episode, being different is actually more normal than many of us realize. 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.
08:27
August 31, 2020
#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.
08:15
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.
07:56
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.
04:38
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.
04:50
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.
04:27
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.
04:35
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.
03:30
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