Butterfly Skin, technically known as Epidermolysis bullosa or EB, is a genetic disease, rare and incurable to date.
The most visible characteristic is the extreme fragility of those who suffer from it. The skin is as fragile as the wings of a butterfly. Everyday actions like walking or eating can be extremely painful.
It is a disease called "rare" since it affects few people in the population. That's one of the reasons why not too many resources are put into research but not only that:
- Patients often get inadequate treatment
- The coverage of health products is scarce
- It is often necessary to travel far to get treatment
- High treatment costs
- Discrimination by other people who are unaware of the disease and, therefore, are afraid of not knowing how to deal with it
- Support needs both in life and in the labor market
Today is a good day to learn more about the subject of butterfly skin disease through, for example, DEBRA (association to help relatives and patients of the disease) and share your knowledge to raise awareness.
Today, November 25, 2020, in VIC (Catalonia) a friend is going to do a marathon in memory of his son Bernat who came and left with that disease. From here I want to send you strength, energy and solidarity in your career today and in life to the whole family. A hug.