Life with Epidermolysis Bullosa
Managing EB involves meticulous wound care to prevent infections and promote healing. This includes using specialized dressings, applying topical antibiotics, and implementing pain management strategies.
Regular monitoring and care by healthcare professionals are crucial to prevent complications and improve the patient's overall well-being. The impact of EB extends beyond the patients themselves to their caregivers, who often experience significant lifestyle changes and psychological stress.
Caregivers must learn specialized wound care techniques and dedicate substantial time to managing the patient's needs. The emotional toll includes dealing with anxiety, depression, and the strain of witnessing a loved one in constant pain.
Support networks and counseling are essential for caregivers to help them cope with these challenges.
Support for Families with a Newly Diagnosed EB Baby
The First 30 Days: Critical Care for Your Baby
Welcoming a newborn with Epidermolysis Bullosa (EB) can be overwhelming and challenging for families. At DEBRA Malaysia, we understand the importance of providing immediate support and guidance to ensure your baby receives the best care possible.
What we do?
Awareness
Awareness
Awareness
Educating the public, government, and private sectors is vital to securing support for patients and their caregivers, advocating for better healthcare resources, and promoting research funding. Increased awareness fosters a more supportive environment and improves the quality of life for those affected by EB.
Educate
Awareness
Awareness
DEBRA Malaysia aims to educate patients and their family on handling Epidermolysis Bullosa (EB), covering disease management, clinical options, caregiver support, and understanding genetics and inheritance.
Research
Awareness
Facilitation
DEBRA Malaysia also promotes research and development to enhance the fundamental understanding of Epidermolysis Bullosa (EB). We engage with the scientific community locally and abroad in scientific, clinical, and social research about EB.
Facilitation
Collaboration
Facilitation
We also facilitate better healthcare services, clinical options, education, and welfare for EB patients and their families. By connecting them with medical practitioners and relevant agencies, we ensure they receive comprehensive support and care.
Collaboration
Collaboration
Collaboration
DEBRA Malaysia collaborates with local and international partners to strengthen support, facilitation, and research efforts for EB, ensuring a comprehensive and coordinated approach to improving the lives of those affected by this condition.
Fundraising
Collaboration
Collaboration
We also promote fundraising activities to support our initiatives and provide financial assistance to EB patients.