Hey,
My name is Deborah Duarte,
I am a mom, a wife, a sister a daughter, a business owner (well I was). Now I am struggling with a diagnosis of FMF and an existing diagnosis of Arthrogryposis. It has been interesting and a struggle. Come follow me on my 53-year journey and how I navigate my daily life.
I remember as a child sitting in the hospital room with 8 other children and crying and wanting my mommy. But she had to go. She had to leave me in a cold hospital room alone at 6 years old. It wasn’t because she wanted to, but I had a sister that she needed to take care of too. I remember the boy I had asked, who was on crutches to please get my mom. She had just left. (as I am writing this the tears are crawling down my face). It’s almost still unbearable. I was born with what was called arthrogryposis.
Arthrogryposis is a rare condition I was born with. It’s actually short for arthrogryposis multiplex congenita (AMC), which is a medical way of saying “multiple joint contractures present at birth.” In simpler terms, it means some of my joints—like my hips, hands, and feet—didn’t develop the way most people’s do. Instead of moving freely, they were stuck, stiff, and hard to move.
There are different types of arthrogryposis, and it can affect each person in unique ways. For me, it meant I faced challenges from day one with basic movements that others might not even think about—things like walking, grasping, or even sitting comfortably. Along with that came surgeries, casts, braces, and a lot of determination.
It’s important to understand:
Arthrogryposis doesn’t get worse over time, but the physical limitations are lifelong. And while it affects the body, it doesn’t touch the mind or spirit—something I had to learn and own along my journey. My mom who was told when I was born to put me in a institution. But she was determined to take me home and make a life for me. I really do owe her a lot. However, my determination is what got me here today. I was determined and because of the way I was raised I was able to act like I was “NORMAL” Now this is just a background of my life before FMF (Familial Mediterranean Fever) But my blog is to share everything I have experienced to get to where I am today.
Free Workshop
between the flares 
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