On March 1, 2019, heavyweight boxer Luis Ortiz was named an honorary ambassador for the EB community by the EB Research Partnership. Ortizs daughter, Lismercedes, was born with EB. Movies
The condition was brought to public attention in 2004 in the UK through the Channel 4 documentary The Boy Whose Skin Fell Off, chronicling the life and death of Jonny Kennedy, an Englishman with EB. In the United States, the same could be said of the HBO documentary My Flesh and Blood from 2003. Additionally, the film Butterfly Girl follows Abigail Evans with the disease. In Canada, The Sports Networks award-winning documentary on Jonathan Pitre led to extensive coverage on the boys disease, treatment, and death. Other names
Other terms used to describe those affected include "butterfly children" as the skin is fragile as a butterflys wings, "cotton wool babies", or "crystal skin children". References
External links

GeneReviews/NCBI/UW/NIH entry on Epidermolysis Bullosa Simplex
Questions and Answers about Epidermolysis Bullosa - US National Institute of Arthritis and Musculoskeletal and Skin Diseases
Metreleptin, sold under the brand name Myalept among others, is a synthetic analog of the hormone leptin used to treat various forms of dyslipidemia. It has been approved in Japan for metabolic disorders including lipodystrophy and in the United States as replacement therapy to treat the complications of leptin deficiency, in addition to diet, in patients with congenital generalized or acquired generalized lipodystrophy.The most common side effects include hypoglycaemia (low blood glucose) and weight loss. Medical uses
In the European Union, metreleptin is indicated in addition to diet to treat lipodystrophy, where people have a loss of fatty tissue under the skin and a build-up of fat elsewhere in the body such as in the liver and muscles. It is used in adults and children above the age of two years with generalised lipodystrophy (Berardinelli-Seip syndrome and Lawrence syndrome); and in adults and children above the age of twelve years with partial lipodystrophy (including Barraquer-Simons syndrome), when standard treatments have failed.In the United States, it is indicated as an adjunct to diet as replacement therapy to treat the complications of leptin deficiency in people with congenital or acquired generalized lipodystrophy. Research
Metreleptin is currently being investigated for the treatment of diabetes and/or hypertriglyceridemia, in patients with rare forms of lipodystrophy, syndromes characterized by abnormalities in adipose tissue distribution, and severe metabolic abnormalities.