123 Momsquad

Let’s talk about Lupus. Check my latest podcast here

Let’s talk about Lupus. Check my latest podcast here

Living with FAP and Short Bowel Syndrome: Jenny’s Story of Resilience

What would you do if you had two rare diseases?
Imagine waking up each day knowing you’re facing not just one, but two rare diseases. It’s a daunting thought, yet for some, like Jenny, it’s a reality they bravely confront.
As a guest on our podcast, Jenny graciously shares her inspiring story, navigating the complexities of living with not just one, but two rare diseases: Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome. Her journey is not just about survival; it’s about thriving and advocating for others in similar circumstances.

Shining a Light on Rare Diseases

Jenny’s commitment to raising awareness about rare diseases knows no bounds. In honor of Rare Disease Day, she released her first children’s book, “Life’s a Polyp with Zeke and Katie,” shedding light on FAP and educating young readers about the importance of early detection and treatment. Additionally, she tirelessly fundraises for research through her initiative, Life’s a Polyp Shop, driving progress towards better treatments and understanding for rare diseases.

Understanding Familial Adenomatous Polyposis (FAP)

FAP is a genetic disease characterized by the development of hundreds of colon polyps, which have the potential to become cancerous if left untreated. But FAP doesn’t stop there – it can also lead to cancer in other parts of the gastrointestinal tract and beyond, affecting organs such as the thyroid, pancreas, and liver. Despite its challenges, she remains undeterred in her fight against FAP and continues to advocate for improved treatments and support for those affected by the disease.

Jenny’s Journey with FAP

At the age of eight, her journey with FAP began when she underwent her first surgery. Since then, she has faced numerous challenges, including malabsorption, dehydration, and chronic fatigue. But perhaps one of the biggest obstacles she has had to overcome is short bowel syndrome, which further complicates her ability to absorb nutrients and maintain hydration.Even in the face of these challenges, her resilience and determination are evident as she manages the highs and lows of life with FAP.

Support and Advocacy

Jenny’s journey vividly demonstrates the transformative power of community and support systems. While her boyfriend plays an indispensable role in her life, offering unwavering assistance with daily tasks, Jenny also draws strength from various support networks she’s a part of. Engaging with online communities and local advocacy groups, she shares her experiences, gathers insights, and offers encouragement to others facing similar challenges. Jenny’s emphasis on self-advocacy and research serves as a beacon of empowerment for individuals navigating chronic illness, encouraging them to voice their concerns, seek alternative treatment options, and explore new avenues of support. Through her advocacy endeavors and candid storytelling, Jenny not only raises awareness but also fosters a sense of unity and resilience among those affected by rare diseases, leaving a lasting impact on their lives.

Tips and Advice for Others with Chronic Illness

Jenny’s journey has taught her the importance of self-advocacy and research. She encourages others facing chronic illness to speak up, ask questions, and explore alternative treatment options. Seeking second opinions and engaging with supportive communities can provide valuable insights and improve overall well-being.
Seek Specialized Care: Find healthcare providers experienced in treating your specific rare disease. They can offer personalized treatment plans and ongoing support.

  • Educate Yourself: Learn about your condition, symptoms, and available treatments from reputable sources like patient advocacy organizations and medical journals.
  • Build a Support Network: Connect with others facing similar challenges through support groups and online communities for encouragement and advice.
  • Prioritize Self-Care: Take care of your physical, emotional, and mental well-being by maintaining healthy habits and asking for help when needed.
  • Advocate for Awareness: Raise awareness about your rare disease by sharing your story, participating in awareness campaigns, and advocating for research funding.
  • Stay Positive: Maintain a positive outlook, focus on what you can control, and celebrate small victories on your journey living with a rare disease.

Her story serves as a testament to the resilience of individuals living with chronic illness. Despite facing numerous challenges, she remains optimistic and determined to manage life with grace and courage. Her journey offers hope and inspiration to others facing similar health struggles, reminding them that they are not alone and that there is strength in community and self-advocacy.

If you’d like to learn more about Jenny’s journey, be sure to check out the full podcast episode now. Listen to the full podcast episode now!

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