If you do a search on youtube you will find several videos with such phrases as snake baby or alien baby in the title. The majority of these videos are actually of real babies born with Harlequin Ichthyosis. Its a very real condition with very real effects. Once you get past the initial shock of the appearance its very sad. Hopefully this article will help shed some light on the subject and raise awareness.
Its called Harlequin-Type Ichthyosis but is also known as Harlequin Disease or Harlequin Ichthyosis. The disease has documented to exist since 1750. Only a couple hundred cases have been reported in modern times. The condition is named Harlequin Disease due to diamond-shaped scales that develop on the body. The cause is thickening of the keratin layer of the skin and it leads to several difficult issues. One of the issues is that the disease restricts movement and what little movement it allows is dangerous due to the cracking of the skin. These cracks in the skin make it very hard to prevent bacteria or other outside factors from infecting the patient. For this reason many dint survive more than a few days.
Several individuals have been born with the disease and have lived long enough to see somewhat normal adult lives. The most notable case is Nusrit “Nelly” Shaheen from the United Kingdom. Nelly is currently in her mid 20s and attending college at Hereward College where she has hopes of earning a degree and becoming a teacher. In the United States Ryan Gonzalez has lived to be nearly 30 years old and competes as a triathlete. These people have lived this long due to a very strict daily routine to treat the condition. Some of the things people with the condition are known to do daily include a high protein diet, multiple baths, scrubbing sessions and the application on numerous creams. Its been said that this condition causes the skin to shed between ten to forty times faster than normal.
As you can see life is very tough on the ones that survive long enough to tell about coping with the disease. It also would have to be very hard on the families. Imagine giving birth to a child with this condition and being unable to hold them or play with them due to fear of damaging the skin or infection. In the case of Nelly Shaheen her parents had 8 other children and 4 of them were born with and died due to Harlequin. Thats something that nobody should have to deal with once let alone 4 times. Maybe in the future when people see these videos and interviews they will think about the “snake baby” and “alien baby” comments and understand that these are real people.
Source(s) – http://www.birminghampost.net/news/west-midlands-health-news/2008/05/09/nelly-is-a-real-diamond-girl-65233-20886612/ , http://en.wikipedia.org/wiki/Harlequin_type_ichthyosis