Claim OwnershipBeyondHAE Youth Produced Podcast
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© US Hereditary Angioedema Association
Description
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.
Visit www.haea.org for Hereditary Angioedema support, information and resources.
56 Episodes
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Dive into the latest episode of the #BeyondHAE podcast as we continue our Day in the Life interview series, featuring our special guest, 14-year-old Caroline. Diagnosed with HAE as a young child, Caroline shares her journey of managing HAE, discussing how she navigates attacks, administers medication, and handles situations as they arise, all while juggling middle school and pursuing her extracurricular passions. Join our host, HAEA Youth Leader Carlie, as she delves into Caroline's experiences growing up with 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 sponsor Takeda.
We are thrilled to introduce a fresh new interview series on the #BeyondHAE podcast! Our "Day in the Life" episodes will delve into the experiences of young individuals with HAE, spanning from diagnosis to treatment management and their everyday routines. In this episode, we shine the spotlight on Bryn who was diagnosed at 16. HAEA Youth Leader Kobe takes the reins, guiding us through a Day in the Life of Bryn.
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 sponsor Takeda.
This month's #BeyondHAE Digging Deeper Interview Series features HAEA Youth Leadership Council Member Sophia who interviews Kia who is both diagnosed with HAE but who is also a caregiver to her son Noah. This episode focuses on Kia's expereinces as a parent caring for her son Noah.
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.
This month's BeyondHAE Digging Deeper Interview Series features HAEA Youth Leadership Council member Noah who interviews Natalie, a award winning filmmaker who has HAE. In this episode, Natalie talks about what it was like for her growing up with HAE, and how she pushed beyond her diagnosis to achieve her goal of becoming a filmmaker and starting a family. This is Natalie's 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.
Thank you to our sponsors BioCryst and Takeda.
The #BeyondHAE Digging Deeper Interview series continues this month with our guest, Nathan who chats with HAEA Youth Leadership Council Member Noah about what it's been like for him growing up with HAE. Nathan joined us from his study abroad program in Switzerland where he is attending college. Nathan discusses what it's been like studying abroad with HAE and what he did to prepare for his time away from home. If you're thinking about traveling internationally or applying for a study abroad program, you won't want to miss this episode! This is Nathan's 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.
Thank you to our sponsors BioCryst and Takeda.
The #BeyondHAE Digging Deeper Interview series continues this month with our guest, HAEA Youth Caregiver Eliana who has grown up supporting her older sister who has an HAE diagnosis. Eliana talked with Youth Leadership Council member Kobe about the personal challenges that she encountered as her older sister was searching for a diagnosis. It's not easy watching your sibling suffer through mis-understood symptoms but Eliana found a way to comfort her sister during those difficult times. Today, they are closer than ever and Eliana has joined her sister in advocating for a better future for people with HAE. This is Eliana's 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.
Thank you to our sponsors BioCryst and Takeda.
Continuing with the #BeyondHAE Digging Deeper Interview Series, this month's episode is hosted by Youth Leadership Council member, Kobe who interviews Mariel, a young woman with HAE who talks about growing up with unexplained symptoms and her journey to finally getting a diagnosis in her 20s. She talks about how she has adjusted her outlook on life to find the positive in being part of the rare disease community. This episode is now available to watch in video format on Spotify.
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.
We kick off the year with a new series of the #BeyondHAE podcast called "Digging Deeper". Each episode in the series will feature an interview from either someone diagnosed with HAE or someone whose loved one is diagnosed as we dig deeper into their experiences with HAE. This episode is hosted by HAEA Youth Leadership Council member Sophia who interviews 10 year old Avery. Avery is a caregiver to her older brother Jack who has HAE. Avery talks about what it's been like for her to support her brother on his HAE journey, and highlights how she has gotten involved to help raise HAE awareness in her own way. This episode is now available to watch in video format on Spotify.
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.
As we wrap up the year, we are thrilled to welcome three young adults with HAE to share their experiences living with a rare chronic condition. This episode was recorded as part of the HAEA Round Tables and covers topics ranging from overcoming challenges at school, coping with HAE through puberty, dating and relationships, and more. Listen now to hear directly from young adults who share stories about their personal triumphs and challenges as they navigate life with 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.
Ally is our host for this month's episode of the #BeyondHAE Podcast series. Ally goes into detail as she talks about the ups and downs of her personal HAE journey and how she navigated through school while managing her condition. She talks about how getting involved in the HAEA youth community and advocating for the condition has impacted her life and helped her to feel more comfortable with her diagnosis.
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.
This month's episode is all about advocacy and awareness as we head into October and kick off HAE Youth Advocacy Month. We hear from three HAEA Social Media interns, Ally, Gabby, and Morgan who talk about how their desire to learn about advocacy and raise awareness about HAE resulted in building lifelong bonds with a community of people who understand their journey. The girls talk about the importance of advocacy and how it's impacted each of them personally.
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.
Back to school season is an important time for all kids, but for kids with Hereditary Angioedema, this time of the year also means educating new teachers about HAE, creating an emergency plan incase an attack happens at school, and managing stress that comes with a new schedule and new expectations. In this episode, we review the collection of useful resources available to help kids and families during this time and we hear from former student Hannah who talks about how she managed her HAE while in school. We have linked several of the resources discussed in the description of this episode. We hope you find them useful.
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.
This month's episode is hosted by Maddie who talks about how she uses social media to raise awareness and advocate for HAE. She also provides some tricks and tips for others looking to advocate on social media.
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.
This month's episode of the #BeyondHAE podcast features two young people with HAE between the ages of 12 and 15 who talk about anxiety, stress, and growth with HAE. This Round Table featured topics like how to talk about your HAE with others, how it feels to have an HAE diagnosis, how to tell when an attack is coming on, and how to manage fear of needles. Our two participants, Lexi and Layna, also talk about advice they would give to other kids who were recently diagnosed with HAE. Listen now to hear insight from kids with 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.
Episode 39 welcomes youth host Paige, who talks about how she copes with her attacks and her experience with attacks while in middle school. She talks about how she has overcome embarrassment and interviews a couple friends who talk about how they support Paige when she swells. Paige wraps up her episode with some advice to others who are not comfortable sharing their HAE diagnosis with others.
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.
This month's episode of the #BeyondHAE podcast features four young people with HAE between the ages of 7 and 11 who talk about what it's like to have HAE. These young individuals discussed relevant topics such as what it’s like for them to grow up with HAE, the fear of needles, discussing their HAE diagnosis with teachers and friends, and more!
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.
This month's episode of the #BeyondHAE Youth Podcast features HAEA Youth Advocate Sydney, who interviews HAEA Engagement Specialist, Lisa Facciolla who talks about her life with HAE, challenges that she overcame, and how she found independence through self-administration.
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.
Episode 36 is hosted by Zanya who talks about her diagnosis journey and some of the challenges she encountered along the way. She talks about how getting involved in HAE advocacy and awareness has helped her come out of her skin and feel more comfortable sharing her diagnosis with people in her life.
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.
In this episode of the #BeyondHAE podcast, Kelsie talks about how she approached introducing her diagnosis to her partner Matt who joins in as a guest host. She talks about the ways that he supports her in her diagnosis and he talks about what it means to him to support his partner.
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.
In this month's episode of the #BeyondHAE podcast, Kira talks about diagnosis journey as the first person in her family to be diagnosed with HAE. She talks about growing up with the condition and eventually the hurdles that she overcame to move away from home to attend college.
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.
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