Epidermolysis Bullosa

I have a rare genetic skin problem, "non-Hallopeau-Siemens autosomal recessive dystrophic epidermolysis bullosa". This condition means that when my skin is damaged, it heels incompletely, leaving it weakened. This is not the classic scar tissue that occurs after deep wounds, but thinner skin that lacks flexibility and is damaged easily. Each time an area is damaged, the new skin is weaker than before. .

• Epidermolysis Bullosa is an umbrella term for genetic skin problems that have blistering as a symptom. The term "Epidermolysis Bullosa" is Latin for 'blistering skin".
• Dystrophic. There are thee major categories of Epidermolysis Bullosa, and "dystrophic" is the type that results in weakened tissue. The other two categories are "simplex" and "junctional"
• Recessive. Generally, recessive genetic conditions are more serious than dominant.
• Non-Hallopeau-Siemens. This is the less serious of the two categories of Recessive Dystrophic Epidermolysis Bullosa. The Hallopeau-Siemens variant is crippling, with a life expectancy in the 30s.
• Autosomal. A genetic term meaning the gene is not on the sex chromosome.

Further Reading for Medical Professionals

Warning - these links contain disturbing images and are recommended for medical professionals only.

• A Case of Non-Hallopeau-Siemens Recessive Dystrophic Epidermolysis Bullosa http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2883369/pdf/ad-21-49.pdf
• What is dystrophic epidermolysis bullosa? http://ghr.nlm.nih.gov/condition/dystrophic-epidermolysis-bullosa
• About EB - http://www.debra.org/modules.php?op=modload&name=News&file=article&sid=18
• Recessive dystrophic epidermolysis bullosa: Presentation of two forms http://dermatology.cdlib.org/143/case_reports/Epidermolysis_Bullosa/medenica.html