But, You Look Healthy

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/

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. 

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/

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. 

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/

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

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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/

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

BreatheCon: https://www.cff.org/Get-Involved/Attend-an-Event/Community-Conferences/BreatheCon-2021/

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/

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