I Can Finally Burp: Living with No-Burp Syndrome - Henry’s Story

The Invisible Condition Podcast

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Imagine going through life without the ability to burp. You might think it’s no big deal but did you know, on average, we burp 10-20 times a day to release the air we take in?

In this episode, Henry shares his life with no-burp syndrome, also known as R-CPD. Henry talks about the physical and social challenges he faced, including countless doctor visits and misdiagnoses, until he finally found relief through an online community that led him to the right treatment.

If you struggle with self-advocacy, this is for you! Henry talks about the importance of standing up for yourself in healthcare. He explains how his persistent research and determination helped him find a doctor who understood his condition and provided the procedure that changed his life. He talks about the balance between trusting medical professionals and doing your research to ensure you get the care you need.

We also touch on the bigger picture of healthcare advocacy and the stigma surrounding invisible conditions.

Henry shares his thoughts on when to seek treatment and the need for society to better understand and support those with invisible disabilities. By sharing stories like Henry’s, we aim to reduce stigma and encourage open and supportive conversations.

This episode is not just informative—it’s an inspiring reminder of the power of perseverance and the importance of being your own advocate.

Takeaways:

• Advocate for Yourself: Take an active role in your healthcare by doing your own research and speaking up about your condition. Your persistence can lead to better outcomes.
• Seek Second Opinions: Don’t hesitate to get another perspective if you feel your concerns aren’t being fully addressed. Questioning a diagnosis is a vital part of ensuring you receive the right care.
• Educate and Support: Help end the stigma around invisible conditions by educating yourself and offering support to others who live with them. Awareness is key to building a more understanding society.
• Informed Discussions: When discussing your condition with doctors, bring facts and research to ensure a thorough and informed conversation. This helps in making collaborative decisions about your health.
• Quality of Life Matters: Improving the quality of life for those with invisible conditions has significant positive effects on overall well-being, emphasizing the need for proper treatment and support.

No-Burp Syndrome (Retrograde Cricopharyngeus Dysfunction, RCPD) - Defined:

• A rare condition where the muscle responsible for allowing air to be released from the stomach does not relax, making it impossible to burp. This can lead to significant discomfort, social embarrassment, and digestive issues due to the accumulation of air in the digestive tract.

Bio: Henry L is a father and husband with two sons, and he is also the owner of a Golden Doodle.

In his spare time, he enjoys spending time with family and friends, observing nature, and playing sports. On days whe

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Kapitler

1. Living With No Burp Syndrome (00:00:00)

2. Advocating for Correct Medical Treatment (00:12:54)

3. Empowering Self-Advocacy in Healthcare (00:18:32)

4. Navigating Healthcare Advocacy and Stigma (00:29:17)

5. Expressing Gratitude and Continued Support (00:38:12)