Where do we end? At a new beginning. We wrap up this series by learning about the physical sensations of taking Trikafta, and the new identity one must cope with at this new frontier of CF. We tie up loose ends. We reflect and try to begin.
To donate to the Cystic Fibrosis Foundation, see link below:
https://www.cff.org/give-monthly/
18 Aug 2021
Episode 13 - Francine
Perspective of a parent, the cost of caregiving, the toll of transformation. Today we talk with Francine. We hear firsthand about the experience of raising a child with cf. We learn about all the impossible questions and challenges that come up in taking physical and emotional care of a family as well as a sick child. We hear yet another voice in a chorus praising the mind blowing transformation Trikafta has brought.
11 Aug 2021
Episode 12 - Terry W.
Cystic Fibrosis Foundation, the power of fundraising, striving for a cure. Today we talk with Terry Waite. We learn about the history of the Cystic Fibrosis Foundation and their fundraising goals and methodology. We begin to understand the herculean effort it has taken to produce gene modulators like Kalydeco and Trikafta, and set our sights forward on treatments for all patients with cf. The CFF dreams big, and hopes to find a cure, not just bandaids.
To connect with the Cystic Fibrosis Foundation, or donate, visit links below:
https://www.cff.org/
https://www.cff.org/give-monthly/
4 Aug 2021
Episode 11 - Dr. Uluer
Pulmonologist, treating the whole person, profound trust. Today we talk with Dr. Uluer. We hear from the medical side of how to think about cf. We learn about the complications of treating an invisible illness and the heartache of growing close to patients with chronic disease.
28 Jul 2021
Episode 10 - Ela
Rare mutation, accessibility battles, and why we still fight. Today we talk with Ela. We learn about the 10 percent of CF patients who have rare mutations and cannot take gene modulators like Kalydeco or Trikafta. Our understanding of advocacy and accessibility gets revisited, and we connect with the clear reason why this fight is not done, and why fundraising must continue until CF stands for Cure Found.
To connect with Ela, visit the links below:
instagram: @ela_castillo
LinkdIn: www.linkedin.com/in/elacastillo/ (http://www.linkedin.com/in/elacastillo/)
28 Jul 2021
Episode 9 -Jacob
The dark passenger, rebirth, and staying loud. Today we talk with Jacob. Our understanding of the complexities of CF gets expanded, while we hear a dramatic tale of Jacob's journey to Trikafta. We hear about how profound Trikafta has been for him, and why it is so important to race towards getting it to all eligible patients.
To connect with Jacob or CF Get Loud Canada, visit the links below:
Instagram: @jajara1
Twitter: @jacobcfgetloud
CF Get Loud Canada
instagram and twitter: @cfgetloud
website: cfgetloud.ca (http://cfgetloud.ca/)
1
21 Jul 2021
Episode 8 - Stephanie
The cf closet, motherhood with Trikafta, and CF Get Loud Canada. Today we talk with Stephanie. We learn about the struggles of navigating hard topics as a child, and another story of how Trikafta has taken someone from desperation to elation. We also learn about the harsh reality of lack of access to Trikafta in Canada, the only developed country in the world without distribution of the gene modulator Trikafta.
To connect with Stephanie, or CF Get Loud Canada, visit links below:
instagram: @rosielifewithgrey
CF Get Loud
instagram and twitter: @cfgetloud
website: https://www.cfgetloud.ca/
21 Jul 2021
Episode 7 - Sarina
G.I. symptoms, mental health pre and post trikafta, CF BreatheCon 2021. Today we talk with Sarina. We learn about the digestive problems and gut issues around cf. We learn about the wide range of the mental toll cf takes, and the new mental challenges trikafta poses in relation to identity, life planning, and more.
To connect with Sarina, or learn more about BreatheCon, visit links bellow:
instagram: @sarinasandstrom
website: www.sarinasandstrom.com (http://www.sarinasandstrom.com/)
BreatheCon: https://www.cff.org/Get-Involved/Attend-an-Event/Community-Conferences/BreatheCon-2021/
14 Jul 2021
Episode 6 - Terry & Michele
Misdiagnosis, race, and the power of teamwork. Today we talk with Terry and Michele. We learn about the National Organization of African Americans with Cystic Fibrosis, a national organization founded by Terry and Michele after Terry was misdiagnosed twice. We learn that the view of diagnosis needs to be expanded, and that race should not play a role in ruling out cystic fibrosis.
To connect with Terry and Michele, or for correspondence with NOAACF, visit their website:
https://noaacf.org/
14 Jul 2021
Episode 5 - Amanda
Nasal polyps, spectrum of experience, and trikafta. Today we talk with Amanda. We learn about how even within a family, CF can vary widely in how it manifests. We also get to hear about the specifics of how trikafta is helping.
To connect with Amanda, find her on instagram or twitter:
@amlorr94
7 Jul 2021
Episode 4 - Jackie
Is this forever, lung transplants, and worthiness. Today we talk with Jackie. We learn about growing up with a disease, and coming to terms with its presence. We hear the intense story of a transplant, and how to move from comparison to worthiness.
To connect with Jackie, find her on instagram:
@Cfer1234
7 Jul 2021
Episode 3 - Mikayla
Telling strangers, hospital visits, and infection protocol. Today we talk with Mikayla. We learn about the difficulties in telling people that we have a life threatening illness, hear about the paradox of the hospital, and discover an isolating truth about this disease.
To connect with Mikayla, find her on instagram and tiktok:
instagram @mikaylabianchinillustration
tiktok @mikscuseme
30 Jun 2021
Episode 2 - Ella
From shame, to acceptance, to connection. This week we talk to Ella. We hear about many classic aspects of a CF journey.
To connect with Ella, visit her website or her instagrams:
www.ellabalasa.com (http://www.ellabalasa.com/)
@ellabalasaadvocacy
@thisgirlella
30 Jun 2021
Episode 1 - But, You Look Healthy
Where do we begin? Here, we learn about cystic fibrosis, what to expect in future episodes, and the nuances of the complexities of living with an invisible disease.
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