In this episode, we speak with Brigham and Women's Hospital and Dana Farber Cancer Institute's Dr. Hermioni "Hermi" Amonoo, an esteemed psychiatrist, psychosocial oncologist, and associate professor at Harvard Medical School. Our discussion centers on the psychological distress associated with graft versus host disease (GVHD) following a bone marrow stem cell transplant. Dr. Amonoo sheds light on the significant psychological challenges patients with GVHD face, noting that approximately 50% experience clinically significant depression, and about a third suffer from anxiety. This psychological distress permeates various aspects of daily life, affecting routines, relationships, and social roles.

Dr. Amonoo uses a powerful analogy to describe psychological well-being, likening it to a toolbox filled with various tools and equipment essential for managing distress. Key components of this toolbox include psychotherapeutic interventions, health behaviors such as good nutrition and physical activity, medication when necessary, and professional help from specialty mental health clinicians. Social support and meaningful relationships also play a crucial role in enhancing wellbeing. Peer support, for instance, can offer valuable lived experiences and tips for thriving despite the challenges posed by GVHD.

We also delve into the importance of the clinical team in managing cGVHD. The clinical team helps patients understand the disease, manage symptoms, and connect with resources. Dr. Amonoo emphasizes the importance of patients communicating openly with their clinical team, urging them not to hesitate in asking questions or expressing concerns about new symptoms.

Pacing oneself is another critical aspect discussed. GVHD is not a static condition, and symptoms can evolve over time. Patients should give themselves grace, avoid overexertion, and maintain a sustainable pace to manage their energy levels effectively. Dr. Amonoo compares this to running a marathon, where pacing is essential to avoid burnout.

Caregivers, who play a vital role in the patient's journey, must also prioritize their own well being. Dr. Amonoo stresses that caregiver well being directly impacts patient well being, encouraging caregivers to practice self-care and seek help when needed. Communication between caregivers and patients is crucial, especially as relationships and priorities may evolve during the recovery journey.

As we conclude, Dr. Amonoo offers final advice to listeners: don't worry alone. Leverage your clinical team and support networks to navigate the challenges of recovery. This collaborative approach can significantly enhance the quality of life for both patients and caregivers.

More:

GVHD Upside Down Facebook Group: https://www.facebook.com/groups/gvhdupsidedown

Elephants and Tea: https://elephantsandtea.com

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

This season is made possible thanks to donations from Syndax and Incyte.

https://syndax.com/

https://incyte.com/

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/