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Rare Disease Day - 2022
Rare Disease Day βΒ 2022
Today is Rare Disease Day. Observed yearly, on the last day of February. To help raise awareness for rare diseases and to improve access to treatment and medical representation for individuals with rare diseases and their families. A disease is considered rare in the United States when it affects fewer than 200,000 Americans. Our son falls under this. His Arthrogryposis falls under thatβ¦
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A special friend ask me to make a doll for her daughters. One has Arthrogryposis (AMC) and her little sister adores her much. As I showed her the dolls last night she told me today is #amcawareness and we wear blue to support. I am so happy to be a part of this. There is so much going on in the world and these little babies are just as happy as any other child! πππππππππππππππππππ #blackdolls #amc ##blueforamc #wearblue #amigurumi #kawaii #naturalhair #naturalista #newyork #beautiful #kidsclub #BlackGirlMagic #blackart #africanamericandolls #flashesofdelight #thatsdarling #mybeautifulmess #canikinkit #bandofun #naturalbeauty #naturalgirl #kidstoys #instatoddler #instakids #sisters #sisterlove #kidsfashion
#amcawareness #amc2014 - A lot of us are artists. Here I am in 2008 doing a charcoal portrait of Jon Knight. Since I canβt use my hands due to Arthrogryposis, I do everything with my mouth. A lot of us with Arthrogryposis adapt by using our feet or mouths when we canβt use our hands because of the joint contractures.
Don't forget to wear blue for Arthrogryposis Awareness Day on June 30! Tag yourself with #AMCAwareness to show support for those living with my disability. It's rare and not many people outside of specialists even know about it. Arthrogryposis is a congenital condition in which joints are made immobile by a fibrous overgrowth of tissue. It comes with a lot of other conditions like osteoarthritis, scoliosis, clubfeet, hip and shoulder dysplasia, and chronic pain. People with Arthrogryposis can endure dozens of surgeries in their lifetimes to try and gain mobility. I've had 19 surgeries personally and I'm having more in the next year. This is a very ignored condition that needs attention. Wear blue and tell people why you're wearing it. Don't forget to tag your pictures on social media!
