About this Event
BEHIND THE BRAVE FACE FOR THOSE AFFECTED WITH SICKLE CELL DISEASE
Join us for a candid conversation on trauma, mental health, and care. This in-person event is all about opening up, sharing experiences, and breaking the stigma around mental health struggles for patients, families and caregivers. Come as you are, connect with others who get it, and let's talk honestly about what it's really like behind the brave face we all wear sometimes. Don’t miss out on this heartfelt and eye-opening gathering!
Agenda
PANELIST 1: Individual Living with Sickle Cell
Info: Focus: Lived Experience; Emotional Impact
Talking Points:
What people don’t see behind living with sickle cell
Emotional toll of chronic pain, hospitalizations, and uncertainty
Experiences with stigma or being misunderstood in medical settings
Mental health challenges (anxiety, depression, trauma responses)
What support has helped — and what support is still needed
Message to caregivers and healthcare providers
Prompt Questions:
“What does a ‘brave face’ look like in your daily life?”
“How has sickle cell impacted your mental and emotional well-being?”
Panel Segment 1: The Hidden Trauma of Sickle Cell
Topics:
Chronic pain as repeated trauma
ER experiences, stigma, and emotional toll
Living in “survival mode”
PANELIST 2: Mental Health Professional
Info: Focus: Trauma-Informed Care; Emotional Wellness
Talking Points:
Sickle cell as a form of repeated or complex trauma
Common mental health challenges for patients and caregivers
Signs of caregiver burnout and compassion fatigue
Coping tools: grounding, boundaries, therapy, peer support
How mental health care improves overall quality of life
Prompt Questions:
“How does chronic illness intersect with trauma?”
“What are practical first steps toward mental health support?”
PANELIST 3: Caregiver (Parent, Partner, Family Member)
Info: Focus: Caregiver Burnout; Emotional Labor
Talking Points:
The invisible responsibilities of caregiving
Emotional exhaustion, fear, guilt, and hyper-vigilance
Navigating ER visits, advocacy, and system fatigue
How caregiving affects mental health, work, and relationships
The importance of caregiver support and boundaries
Prompt Questions:
“What is the hardest part of caregiving that people don’t talk about?”
“When did you realize you also needed support?”
PANELIST 4: Medical Professional / Hospital Representative
Info: Focus: Systems, Compassionate Care; Partnership
Talking Points:
Importance of holistic, patient-centered care
Addressing stigma and bias in healthcare settings
Integrating mental health into chronic illness treatment
Value of community partnerships and patient voices
Hospital commitment to education and support
Prompt Questions:
“How can healthcare systems better support emotional wellness?”
“What does compassionate care look like in practice?”
Event Venue & Nearby Stays
MidTown Collaboration Center, 1974 East 66th Street, Cleveland, United States
USD 0.00











