WARNING: The Youtube video posted below (Belongs to Real Stories, NOT On Both Fronts) can be seen as "graphic" to viewers with a weak stomach. Some of the images can be seen as disturbing, however they are real life images of those who suffer with these genetic disease so exposure is the most important thing. Exposure equals understanding. Understanding equals tolerance. So I'm writing this article to share an interesting story, one that I had no idea even existed, until I stumbled upon this amazing story while finding Youtube videos for my playlists. I instantly become fascinated by their story, and couldn't stop watching the video even though it was like thirty minutes long. I HIGHLY recommend watching the video. "My Skin Could Kill Me"Added warning: It might make you cry. I know I sure did! Harlequin IchthyosisThis is such a rare condition that it's exact prevalence is unknown. The numbers are believed to be 1 in 300,000 live births. It is the extreme thickening of the skin, nearly four times the amount of skin a normal human carries day to day. When born, thick cracks in the skin, or fissures, leave the newborn open to all sorts of deadly infections. With numerous creams and body butters applied three to four times daily, a person with Harlequin Ichthyosis can overcome the overall tightness of the skin. Thick skin prevents movement, especially around joints that are meant to move fluidly like ankles and wrists. Bathing is an essential part of coping with the excess of skin. As seen in the video above, these children bathe twice a day, scrubbing their skin until they are bright red. It can sometimes be painful to peel away their own skin. Sadly, it is necessary for these people to cope with everyday life. Many infants with the condition die not long after being born because of deadly infections that enter the body through the deep cracks in their skin. Thankfully modern medicine have raised the rates of children with this disorder surviving longer than a few days. With ongoing medical visits and parental support, these babies can survive into adulthood. InheritanceChildren born with this condition resemble something out of outer space, if you ask me. If you watched the video, you'd see more life-like pictures of the girls born with this condition. Their red eyes are the things that frighten me the most. Almost like they are no eyeballs in their sockets, just balls of blood vessels. It is unbelievable that they are so different as babies compared to when they just get a little bit older. It is inherited through the parents, by recessive genes. Both parents must carry the recessive trait to conceive a child with the disorder. Like mentioned in My Skin Could Kill Me parents then have a one in four chance of conceiving a child with the same condition. In both instances in the movie, they were given a second child with Harlequin Ichthyosis. However it is later revealed by the genetic team that both families were being studied by, that the two families originated from the same region, meaning the same ancestor. So way down the line, they all inherited the recessive gene from a common person within their lineage. However this can be diagnosed during pregnancy using a fetal skin biopsy or using amniocentesis. Ultrasounds and now 3D ultrasounds are able to identify the features of the condition (short foot length, incurved toes, clenched fists, poor delineation of nostrils, and polyhydramnios) though it is difficult to say if a normal midwife or family doctor would be able to identify the condition exactly without genetic testing. Quick Facts
From the eyes of a special needs parent who has to do quite a bit more on the daily for my son compared to others, I am able to breathe a sigh of relief that I do not have to do as much as the mothers in this video have to. It is an unbelievable sacrifice but I'm amazed at how those women keep going. Both parents, really. Just astounding, and applaud-able. I know they really didn't have a choice, because none of us feel like we do, but they really are going above and beyond to make sure their children survive. To me, that is commendable for any parent to do such a thing despite their own happiness and ability to carry on their own lives. I am giving a big clap to those who suffer with this disease and carry on with the grace and love of life that all of us should show. Because life is a blessing, no matter which way we slice it, and no matter how difficult it gets.
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AuthorGabrielle Rae is a special needs, stay at home mommy of two boys. She enjoys reading and writing novels in her spare time. @onbothfrontsArchives
August 2018
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