Long-term follow up of Epidermolysis Bullosa in real practice shows stability of the EBDASI and improvement with some off-label therapies

Supplementary 1. EBDASI scores of patients with EBS (Fig 1, JEB (Fig 2), DDEB (Fig 3) and RDEB (Fig 4) against age of patient with significant interventions indicated by red arrow. Blue line= EBDASI activity sub scores; Red line = EBDASI damage sub scores.; A1- Recessive EBS #361; A2- EBS-Plec #605; A3 -EBDASI for EBS #34, in green is the Eczema Area and Severity Index score of patient #34; A4-EBS # 49; B1- DDEB #17-VI:14; B2- DDEB #213; B3- DDEB #345-2; C1- JEB AEBRB #11-2; C2- JEB AEBR #11-1; C3 -JEB AEBR#31; C4-JEB AEBR#14; C5- JEB AEBR#488; D1 RDEB-GI #485 ; D2-RDEB-GS #36; D3-RDEB-GS #86 ; D4-RDEB-GS #412; D5-RDEB-GI #398 ; D6- RDEB-GI #595
Abbreviations: AEBR= Australasian Epidermolysis Bullosa Registry ; PBM=photobiomodulation; SPC= Supra-pubic catheter.