On March 27th, Lyra had her first visit with a pediatric dermatologist. The doctor provided a lot of great advice and suggestions and showed a lot of expertise in the areas of skin care and sun protection for a person with albinism.
However, I was extremely disappointed by her lack of general knowledge regarding albinism. She asked me how I knew Lyra inherited albinism from me and my husband.
Does she not know albinism is a genetic condition and the ONLY way Lyra could get oculocutaneous albinism is by inheriting it from me and my husband because it is an autosomal recessive gene. The only type of albinism that isn’t autosomal recessive is a form of ocular albinism that is X linked. You can’t “get” albinism any other way…its not leprosy.
Also, she asked me if Lyra had any hearing problems, because “sometimes people with albinism have hearing loss.” WRONG!!!!!! This is SOOOO incorrect. I wasn’t sure at the time she said this, but I’ve done my research. The only condition even related to albinism, that does include hearing problems, is called Waardenburg syndrome. In the definition, it is referred to as “partial albinism” and it is an AUTOSOMAL DOMINANT condition. There no forms of oculocutaneous albinism in which hearing is affected.
If this dermatologist did happen to treat a person who had albinism AND hearing loss, then the hearing loss was caused by some other condition…not the albinism.
Parents of a child with albinism have enough things to worry about without someone telling them their child may have hearing loss.
Lastly, she referred to Lyra as having pink eyes. Now I know sometimes when the bright lights are shining directly into them, they my APPEAR pink, but Lyra has BLUE EYES! This is a huge pet peeve of mine. There is no such thing as pink iris color.
She is a doctor and should know this.
She did refer me to NOAH, which I am already a member of, but I think she needs to visit their website and do a little homework.
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