staying flexible can help you and your child adapt to new challenges and changes in treatment.
Seek Emotional Support
Coping with a rare disease can be emotionally taxing. Consider counseling or therapy for you and your child to help manage stress and anxiety.
Advocate for Your Child
Be a strong advocate for your child’s needs within the healthcare system, school, and community. Educate others about Pompe disease to raise awareness and promote understanding.
Managing Pompe disease in Black children requires a holistic approach that addresses their physical, emotional, and developmental needs. However, with these tools, you are fully capable of helping your child thrive despite the challenges of this rare condition.