#BeyondHAE Digging Deeper Interview Series: I am a young adult with HAE (Mariel)
#BeyondHAE Youth Produced Podcast
by US Hereditary Angioedema Association
2w ago
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 pati ..read more
Visit website
#BeyondHAE Digging Deeper Interview Series: My brother has HAE (Avery)
#BeyondHAE Youth Produced Podcast
by US Hereditary Angioedema Association
2M ago
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 awarenes ..read more
Visit website
#BeyondHAE: HAEA Round Table: Young Adults (Kayla, Jack, and Morgan)
#BeyondHAE Youth Produced Podcast
by US Hereditary Angioedema Association
3M ago
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 adv ..read more
Visit website
#BeyondHAE: My HAE Diagnosis and Management Journey (Ally)
#BeyondHAE Youth Produced Podcast
by US Hereditary Angioedema Association
4M ago
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 caregiv ..read more
Visit website
#BeyondHAE: HAEA Round Table: Anxiety, Stress, and Growth with HAE
#BeyondHAE Youth Produced Podcast
by US Hereditary Angioedema Association
9M ago
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 suppor ..read more
Visit website
#BeyondHAE: An Interview with Lisa Facciolla (Sydney & Lisa)
#BeyondHAE Youth Produced Podcast
by US Hereditary Angioedema Association
1y ago
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 BioC ..read more
Visit website
BeyondHAE: Learning to feel comfortable with my condition (Zanya)
#BeyondHAE Youth Produced Podcast
by US Hereditary Angioedema Association
1y ago
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. T ..read more
Visit website
#BeyondHAE: The first in my family with HAE (Kira)
#BeyondHAE Youth Produced Podcast
by US Hereditary Angioedema Association
1y ago
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 sponso ..read more
Visit website
#BeyondHAE: Finding Comfort in Community (Jess and Hannah)
#BeyondHAE Youth Produced Podcast
by US Hereditary Angioedema Ass.
1y ago
In this month’s episode of the #BeyondHAE Youth Podcast, we invite you to listen to Jess and Hannah’s story. They describe how meeting someone else their age with HAE changed their outlook on life and helped them to feel validated in their struggles with the rare chronic illness. 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 spons ..read more
Visit website
#BeyondHAE: How Advocacy and Awareness Has Impacted My Life (Emma)
#BeyondHAE Youth Produced Podcast
by US Hereditary Angioedema Ass.
1y ago
In episode 33, Emma shares her personal HAE journey and talks about how getting involved in the HAEA community has helped her better cope 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 ..read more
Visit website

Follow #BeyondHAE Youth Produced Podcast on Feedspot for daily/weekly email updates.

Continue with Google
Continue with Apple
OR