Podcasts by BeyondHAE Youth Produced Podcast

#BeyondHAE Digging Deeper Interview Series: The Parent Perspective (Nikia) from 2023-11-01T16:06:41

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 ...

#BeyondHAE Digging Deeper Interview Series: Overcoming Barriers to Pursue A Passion for Filmmaking (Natalie) from 2023-08-30T20:51:20

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, Nata...

#BeyondHAE Digging Deeper Interview Series: Studying Abroad with HAE (Nathan) from 2023-07-01T17:50:48

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 ...

#BeyondHAE Digging Deeper Interview Series: My caregiver journey (Eliana) from 2023-05-01T17:55:37

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 talk...

#BeyondHAE Digging Deeper Interview Series: I am a young adult with HAE (Mariel) from 2023-02-27T17:56:19

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 ab...

#BeyondHAE Digging Deeper Interview Series: My brother has HAE (Avery) from 2022-12-30T20:18:36

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 o...

#BeyondHAE: HAEA Round Table: Young Adults (Kayla, Jack, and Morgan) from 2022-12-02T18:05:14

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 Roun...

#BeyondHAE: My HAE Diagnosis and Management Journey (Ally) from 2022-10-31T19:51:56

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 s...

#BeyondHAE: Commemorating HAE Youth Advocacy Month with a talk about advocacy and awareness from 2022-09-28T16:14:19

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 ...

#BeyondHAE: Preparing for Back to School (Lisa & Hannah) from 2022-08-31T19:15:52

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 in...

#BeyondHAE: I Use Social Media to Advocate for HAE (Maddie) from 2022-08-01T15:34:37

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 ...

#BeyondHAE: HAEA Round Table: Anxiety, Stress, and Growth with HAE from 2022-07-01T15:37:23

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 top...

#BeyondHAE: Managing my HAE in Middle School (Paige) from 2022-05-31T21:06:16

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 an...

#BeyondHAE: HAEA Round Table: How Does It Feel to Be a Kid with HAE? from 2022-05-02T20:54:29

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 relev...

#BeyondHAE: An Interview with Lisa Facciolla (Sydney & Lisa) from 2022-03-28T14:08:01

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 ...

BeyondHAE: Learning to feel comfortable with my condition (Zanya) from 2022-02-28T13:40:34

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 h...

#BeyondHAE: HAE and Dating (Kelsey and Matt) from 2022-01-31T13:44:44

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 supp...

#BeyondHAE: The first in my family with HAE (Kira) from 2022-01-03T00:18:44

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 an...

#BeyondHAE: Finding Comfort in Community (Jess and Hannah) from 2021-11-30T17:57:55

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 li...

#BeyondHAE: How Advocacy and Awareness Has Impacted My Life (Emma) from 2021-10-29T16:58:27

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 i...

#BeyondHAE: Moving Away for College (Kobe) from 2021-10-04T17:04:42

Moving away from home to go to college can be a big adjustment for everyone, however, it can be a particularly big move for someone with HAE. Tune in to this month's #BeyondHAE podcast to hear h...

#BeyondHAE: Never Give Up (Karissa) from 2021-09-01T15:58:48

This month's episode of the #BeyondHAE podcast is hosted by Karissa who shares her personal HAE story of perseverance and hope. Karissa experienced years of mis-diagnosis and had moments when he...

#BeyondHAE: Living #BeyondHAE with the HAEi Youngsters (Nanna, Erini, Isabel, and Nevena) from 2021-08-04T18:25:04

We are excited to welcome members from the HAE International Youngsters community as the hosts for this episode. Nanna, Erini, Isabel, and Nevena represent countries from all corners of the worl...

#BeyondHAE: How I Support Team Jack (Ally) from 2021-06-30T17:34:24

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 acti...

#BeyondHAE: We are Caregivers (Ava) from 2021-06-01T16:45:36

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, bu...

#BeyondHAE: Understanding Anxiety (Carlie) from 2021-04-30T16:58:28

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 al...

#BeyondHAE: Chat with my Mom: Managing Life's Changes from 2021-04-05T16:27:36

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 strate...

#BeyondHAE: Chat with my Mom: Managing Life's Changes (Sophie) from 2021-04-05T14:27:36

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 strate...

#BeyondHAE: Modern HAE medication has allowed me To live #BeyondHAE from 2021-03-02T17:34:32

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 ...

#BeyondHAE: Modern HAE medication has allowed me To live #BeyondHAE (Sophia) from 2021-03-02T17:34:32

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 ...

#BeyondHAE: Interview With My College Roommate (ReyJeanne) from 2021-02-01T17:09:55

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 eme...

#BeyondHAE: 5 Years Can Make a BIG Difference (Luke) from 2020-12-30T20:12:24

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 lif...

#BeyondHAE: My Emergency Room Experiences (Jack) from 2020-11-30T13:35:02

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, b...

#BeyondHAE: HAE and Sports (Noah) from 2020-10-30T14:56:40

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 podca...

#BeyondHAE: Talking to friends about HAE (HAEA YLC) from 2020-10-30T14:54:08

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 ...

#BeyondHAE: Managing Stress (Ava) from 2020-10-01T19:39:34

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 ...

#BeyondHAE: Art is my Therapy (Gabriela) from 2020-10-01T19:37:46

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 produce...

#BeyondHAE: Maddie's Story from 2020-08-31T21:49:18

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 be...

#BeyondHAE: Being Different is Normal (Kobe) from 2020-08-31T16:20:37

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 differen...

#BeyondHAE: Back to School Tips with the HAEA Youth Leadership Council from 2020-07-29T17:56:17

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 ...

#BeyondHAE: Advocating for yourself at school (Gabriela P.) from 2020-07-29T17:47:17

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 scho...

#BeyondHAE: Independence and Self-Administration (Sophia) from 2020-07-01T17:49:56

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 ...

#BeyondHAE: Travel Tips (Kyleigh) from 2020-06-25T17:21:31

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 tra...

#BeyondHAE: Interview with my Mom (Carlie) from 2020-06-03T18:07:14

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 fri...

#BeyondHAE: The Impact of COVID-19 on our lives and our HAE (HAEA Youth & HAEi Youngsters Collaboration) from 2020-05-22T18:58:35

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 abou...

#BeyondHAE: Navigating Friendships and HAE (Jasmeen) from 2020-05-18T17:04:09

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 experienc...

#BeyondHAE: Anxiety and HAE (Jack) from 2020-04-29T16:27:34

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 ...

#BeyondHAE: How I Advocate for HAE (Stephen) from 2020-03-30T17:40:55

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 h...

#BeyondHAE: My role as a caregiver to my little sister (Ava) from 2020-02-21T19:07:43

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 ...

#BeyondHAE: Staying Active Helped Me Push Through Challenges (Luke) from 2020-01-30T01:44:58

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. L...

#BeyondHAE: When There's a Will, There IS a Way (Maddie) from 2019-12-19T19:53:33

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...

#BeyondHAE: Creating a Strong Support System (Noah) from 2019-12-11T18:45:36

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 famil...

#BeyondHAE: We're in Washington, DC for HAEA's Capitol Hill Day from 2019-11-01T23:12:25

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 tog...

#BeyondHAE: What is HAE from 2019-11-01T22:59:41

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...