Chenese Piebaldism
Chenese Nicole
Created on November 10, 2023
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Chenese Griffith
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The untold story of: kearya hendrix
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Kearya Hendrix (XX) was born Janurary 30, 2016 to Andrea (27 XX) and Nigel (29 XY). They are all African American Both of her parents have Piebaldism
Kearya Hendrix
Kearya comes from a long line of people who have piebaldism. Her grandparents met at a support group and had her mom and aunt who both have peibaldism. Kearya's aunt is not married and does not have kids due to her being scared of passing it down. Kearya's mom met her dad at a support group as well and had kearya and is now pregnant with their second child alex (XY) who will also have it. Kearya's parents plan to put her in a support group when she is older.
Family History
Piebaldism is a condition characterized by the absence of cells called melamocytes in certain areas of the skin and hair. It is a rare autosomal dominant disease that causes mutations in the c-kit gene located on chromosome 4q12 and the SNAI12 gene on chromosome 8q.11.21. This disease causes a patch of white skin or hair to appear at birth. The c-kit gene is what allows melanblast and melancytes freely and give our skin what we know is melanin but with piebaldism the kit gene is mutated which casues abnormal flow of mealocyteThe SNAI12 gene is less common but is still seen in cases of peibaldism. This deletion mutation combined with the kit gene can cause peibaldism.
What is Piebaldism
This disease is so rare that it happens in about 1 :20000. It affects both male and female and all races can have it. There is no treatment for this diease. People who have piebaldism they will have it forever but could always apply makeup to cover the area. The lifespan of people with piebaldism is a regular lifespan but they do have to be more careful than other because their skin is more prone to skin damage such as skin cancer . It is suggested that they wear sunscreen and provective clothing when going out.
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Kearya is a beautiful 7 year old girl who is excited to become a big sister and teach her brother all about their special trait. She wears sunscreen everyday and long sleeves when going out. When she is older her parents will put her in a support group where she can learn all about peibaldism and feel more comfortable and hopefully meet more people like her.
What is Kearya up to now ?
Agarwal, S., & Ojha, A. (2012). Piebaldism: A brief report and review of the literature. Indian Dermatology Online Journal, 3(2), 144. https://doi.org/10.4103/2229-5178.96722 Alexander. (2022, June 16). GARD Rare Disease Information - Piebaldism - National Organization for Rare Disorders. National Organization for Rare Disorders. https://rarediseases.org/gard-rare-disease/piebaldism/ Piebaldism | DermNet. (n.d.). https://dermnetnz.org/topics/piebaldism Piebaldism: MedlinePlus Genetics. (n.d.). https://medlineplus.gov/genetics/condition/piebaldism/ Whnp-Bc, L. S. M. B. (2023, June 21). What is piebaldism and what causes it? https://www.medicalnewstoday.com/articles/320561#takeaway
References
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