I am a mother of a 3-year-old with Recessive Dystrophic Epidermolysis Bullosa. Amber Elsey referred your article to our online support group. This was a great article to spread EB awareness, however, the information provided on recessive dystrophic was way off.
The form Elijah has, which falls into the dystrophic category, is very different from recessive. However, recessive dystrophics can and have lived beyond two years. My daughter is proof of that and so are many others who are 30 and above. Yes, the risk for squamous cell carcinoma or secondary infection is high and from time to time cause death. However, the only form that usually does not live past two years is junctional epidermolysis bullosa Herlitz form.
RDEB has a life expectancy of 30 years, but this, too, has progressed with research and preventative care.
I think it was great to take the initiative to write an article on epidermolysis bullosa. But if you can mention the correction in your newspaper, that would be great. Imagine being a new parent with a child that was diagnosed with recessive dystrophic and coming across this comment?
I hope you understand. Thanks!
Sally Contreras, Mother of Bianca, 3, Miami Beach, Fla.
© 2016. All Rights Reserved. | Contact Us