summary
In this episode of Coffee and Community, host Holly Priebe speaks with Sabrina, a young adult living with cutaneous lymphoma. Sabrina shares her journey from misdiagnosis to advocacy, discussing the challenges she faced in navigating her diagnosis, treatment, and the importance of community support. She emphasizes the need for self-advocacy, the significance of finding a trusted physician, and the power of sharing experiences to inspire others. Sabrina's story is one of resilience, hope, and the drive to give back to the community that has supported her.

takeaways

• Sabrina was misdiagnosed for six to seven years before receiving the correct diagnosis of cutaneous T-cell lymphoma.
• Living with cutaneous lymphoma has taught Sabrina that it is a part of her but does not define her.
• Sabrina faced significant challenges in accessing treatment, including long commutes and delays in care.
• Family support has been crucial for Sabrina throughout her journey with lymphoma.
• Sabrina emphasizes the importance of self-advocacy in navigating the healthcare system.
• Finding a trusted physician is essential for managing chronic conditions like cutaneous lymphoma.
• Sabrina encourages others to allow themselves to feel their emotions and not always be positive.
• Community support has been vital for Sabrina, providing a space to share experiences and feelings.
• Sabrina actively gives back to the cutaneous lymphoma community through advocacy and fundraising.
• Sabrina believes everything happens for a reason and aims to inspire others facing similar challenges.

Chapters

00:00 Sabrina's Journey with Cutaneous Lymphoma
13:07 Navigating Treatment Challenges
22:23 Finding Community and Support
28:19 Advice for Newly Diagnosed Patients
32:47 The Importance of Advocacy and Giving Back

Summary

In this conversation, Sheila J shares her journey with cutaneous T-cell lymphoma, emphasizing the importance of patient advocacy, the power of information, and the need for community support. She discusses her experiences navigating the healthcare system, overcoming fear, and living successfully with her diagnosis. Sheila highlights the significance of building trust with healthcare providers and the role of knowledge in empowering patients to take control of their health. The conversation also touches on the importance of diet, mental health, and the impact of community in managing chronic illness.

As promised: to follow Sheila and her amazing cooking show please visit www.gangstagoodieskitchen.com

takeaways

• It's important to be your own advocate in healthcare.
• Building relationships with compassionate healthcare providers is crucial.
• Information empowers patients to make informed decisions.
• Fear can hinder seeking necessary medical help.
• Community support plays a vital role in coping with illness.
• Living successfully with a chronic condition is possible.
• Diet and lifestyle choices can impact health outcomes.
• Trust in healthcare is essential for effective treatment.
• Sharing experiences can help others navigate their journeys.
• Empowerment comes from knowledge and community engagement.

00:00 Introduction to Sheila's Journey with Cutaneous Lymphoma

01:26 The Diagnosis Journey: From Rash to Realization

05:42 Coping with the Diagnosis: Embracing Life

08:23 Treatment Decisions: Choosing an Aggressive Approach

13:33 Empowerment Through Knowledge: Advocating for Oneself

18:28 Lifestyle Changes: Nutrition and Wellness

18:29 Community Support: The Importance of Connection

20:08 Empowerment Through Advocacy

20:31 Connecting with Survivors

22:57 The Importance of Information

25:17 Giving Back to the Community

27:50 Addressing Misconceptions

30:08 Living Boldly with a Diagnosis