Epidermolysis Bullosa NewsWatching My Son Deal with the Never-ending Pain of EB

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This first-person account from the mother of a child with epidermolysis bullosa (EB) provides critical insights into the daily challenges and clinical manifestations of this rare genetic condition. The narrative illustrates the constant pain management challenges, wound care requirements, and psychological impact on both patients and caregivers.

Key Points:

• The patient experiences continuous pain with a baseline severity estimated at 7/10, demonstrating the need for comprehensive pain management protocols beyond standard wound care
• Friction-induced blistering occurs from minimal contact, including routine activities such as turning in bed or contact with clothing tags, indicating the severity of skin fragility
• Oral manifestations include blistering that impairs eating and drinking, highlighting the need for specialized nutritional support and oral care protocols
• Daily wound care routine involves multiple interventions across approximately 20 distinct body sites, suggesting the need for efficient, systematic wound management strategies
• The chronic nature of symptoms impacts quality of life and psychological well-being for both patient and caregiver, indicating the importance of integrated psychological support in treatment plans

“I need to be able to help my son. I need to do more. I need to be able to take it away. I tell him all the time I’d take it on myself if it meant I could take it off of him. ‘No way,’ he responds. ‘I’d never want this put on you.’ Oh, my heart.”
– Patrice Williams

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