#cysticfibrosis

On this episode of the Sick and Seeking Podcast, I speak with dear friend Nicole Moyer about what it’s like living with a variety of health issues including: Cystic Fibrosis; Type 1 Diabetes; Hashimotos Disease; Cervical Cancer; Chronic Kidney Stones and Kidney Failure

Even with these many health conditions, Nikki approaches life with humor, positivity and prayer. She shines a brilliant light into the world with her huge heart, and I’m blessed to call her my friend.

We speak about:

• The different health challenges Nikki manages
• The question of: how much do we honor what our body is telling us and stay in bed, versus override the messages and force ourselves to get on with our day
• How we say we are "fine" when in reality we may not be feeling great
• Invisible illness and how people would never know about Nikki’s health conditions
• What is cystic fibrosis and how it impacts the body
• The miracle drug Tricalfta, released in 2019, which significantly helped improve Nikki’s lung function
• The life expectancy of people diagnosed with cystic fibrosis
• Fear and trauma connected to the hospitals 
• How prayer and Jesus can be a powerful and supportive force in our darkest moments
• The Bible’s Psalm 91 and how Nikki believes that saying this prayer helped her avoid dialysis
• Nikki’s life as a foster parent 

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Sick and Seeking Disclaimer

Dr. Samya Nasr, Director of the CF Clinic at the University of Michigan hospital, and Professor of Pediatrics.  In 1997 Dr. Nasr began talking to doctors in her native country of Egypt about the fact that many CF patients were not being diagnosed.  Physicians there (and the Ministry of Health) didn't believe CF existed in their country.  In 2007 Dr. Nasr convinced doctors it did exist after testing people with symptoms and diagnosing 1,000 patients.  Dr. Nasr talks about the challenges faced today (lack of medications), the challenge for the future (getting pharma the ability to license drugs so they will be covered under insurance. They can’t until the government recognizes the genetic disease) and getting patients CF modulators. 

For more information on The Bonnell Foundation and how you can help fight CF in Egypt, find us at https://thebonnellfoundation.org/

Sponsor: Vertex Pharma - the science of possibility. https://www.vrtx.com

The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis.  You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic

This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

Please like, subscribe, and comment on our shows, wherever you get your podcasts.

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com 

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Dr. Maggie Naguib works at Cairo University in Egypt and is a Professor of Pediatrics.  She talks to Host Laura Bonnell in this podcast, along with Dr. Samya Nasr from the University of Michigan hospital. Dr. Nasr is the Director of the CF clinic and professor of pediatrics.  Dr. Naguib shares her struggles as a doctor in Egypt who has helped diagnosed 1,000 people with cystic fibrosis.  This is thanks to the help of Dr. Nasr who travels back to Egypt once a year.  Dr. Nasr arranged for sweat test machines so that doctors could start testing for the disease.  Families were losing multiple children to the disease without knowing why, until testing began.  Hear their challenges and success in this podcast.

For more information on The Bonnell Foundation and how you can help fight CF in Egypt, find us at https://thebonnellfoundation.org/

The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis.  You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic

This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

Please like, subscribe, and comment on our shows, wherever you get your podcasts.

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com 

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Thirty-five-year-old Anas Mansour has 5-year-old twin boys with cystic fibrosis. He lives in Cairo, Egypt.  Mansour and his wife are trying to keep the boys as healthy as possible, but it is challenging.  The disease isn't officially recognized yet in Egypt, so insurance doesn't cover medications.  The medications they do have access to aren't like anything we have in the United States.  Even basic care, such as getting your hands on digestive enzymes for example, it is difficult and costly.  Mansour believes he may have to leave his country to make certain his children get the medications they need.  Things are getting better there, but today the life expectancy is 12 years old, whereas it's 47 years old in the U.S.  You'll hear his heartbreaking story.

For more information on The Bonnell Foundation and how you can help fight CF in Egypt, find us at https://thebonnellfoundation.org/

Sponsor: Vertex Pharmaceutical - the science of possibility. https://www.vrtx.com

The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis.  You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic

This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

Please like, subscribe, and comment on our shows, wherever you get your podcasts.

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com 

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Laura Bonnell (Detroit), Kat Porco (Montana), Jen Caruso (Delaware) and Siri Vaeth (California) have have 5 children with cystic fibrosis between them. The kids are ages 14 to 25 years old.  This CF Tribe of Moms has seen a lot.  All of us have almost lost our kids to the disease.  We're all going through the same challenges and joys.  We wanted to share our hopes, fears, realities and plans for the future with all of you.

Please like, subscribe, and comment on our shows, wherever you get your podcasts.

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com 

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en