31. Meet a Fighter: Familial Adenomatous Polyposis & Short Bowel Syndrome ft. Jenny Jones

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The Rare Disorder Podcast

Shivani Vyas

43 episodes

2 days ago

The Rare Disorder Podcast is a podcast created by Shivani Vyas, a high school senior, young changemaker, and rare disease advocate, dedicated to spreading awareness for rare diseases. This podcast is divided into 2 main series. In the "Meet a Fighter," Shivani interviews patients and those affected by rare diseases allowing them to share their inspirational stories. In "Meet An Expert/Partner," Shivani interviews public health experts, rare disease organization leaders, rare advocacy leaders, and more! Check out my other initiatives and platforms: https://linktr.ee/theraredisorderpodcast

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31. Meet a Fighter: Familial Adenomatous Polyposis & Short Bowel Syndrome ft. Jenny Jones

The Rare Disorder Podcast

20 minutes 18 seconds

4 years ago

31. Meet a Fighter: Familial Adenomatous Polyposis & Short Bowel Syndrome ft. Jenny Jones

In this episode, I interview Jenny Jones, a fighter of Familial Adenomatous Polyposis and Short Bowel Syndrome.

Jenny was diagnosed with the rare, hereditary colon cancer syndrome Familial Adenomatous Polyposis at age 8 and had her first surgery to remove her colon at age 9. After experiencing life-threatening complications, Jenny required 4 more surgeries that year and developed another rare disease - Short Bowel Syndrome as a result. She lived with an ileostomy for 6 years before having it reversed into a Straight Pull Thru and again experienced life-threatening complications. Jenny has been able to surpass all the odds though and went on to earn a Master's Degree and maintains full time employment in addition to her rare disease awareness and advocacy efforts through her blog, Life's a Polyp.

Keep up with her advocacy journey!

Blog: www.LifesaPolyp.com

Youtube: www.Youtube.com/LifesaPolyp

Merch Website: www.CafePress.com/LifesaPolyp

Social Media Handle: LifesaPolyp