genetic condition

‘I went on countless job interviews, but I didn’t ‘look the part.’ The second they saw me, the whole vibe changed.’: Woman with Nemaline Rod Myopathy embraces disability, ‘I want to be seen for the smart, fun, boss babe that I am’

“After graduation, I was excited to take on the world! That feeling quickly died. Every employer assumed I wasn’t qualified. I didn’t have a specific ‘look,’ or I didn’t fit the part. I realized I didn’t want to work someplace where I would be judged by the way I look, not by the work I contribute. Appearances matter, but they matter even more when you’re disabled. And the hardest part about being disabled isn’t being disabled. It’s fighting to be seen as an equal.”

‘You look like you’ve been mauled by a gorilla. What happened to you?’ I lied. She didn’t deserve to know.’: Woman with terminal genetic condition embraces her scars, ‘Look how hard my body works to keep me alive!’

“I was leaving the grocery store. An older woman was staring at me. I felt the familiar rush of blood heat my cheeks and anger rise in my throat. Instead of asking questions about a body that wasn’t hers, she smiled widely. ‘I think I saw you in a magazine!’ I exhaled and laughed, confirming that she had. My scarring looks like burns. This is ‘the worst disease you’ve never heard of.'”

‘Will you excuse me?’ The cake smash was ready. Except, I was in my closet, crying uncontrollably.’: Mom breaks down at daughter’s first birthday party, discovers Cri Du Chat diagnosis

“This was her first birthday party. We had over 30 guests waiting downstairs to celebrate her. I couldn’t go down. I only had one thought: ‘This day is a celebration of everything she can’t do.’ In my closet, I huddled in a ball, trying to find my brave face. We were already 3 months into speech and physical therapy. We’d seen all 3 specialists and were no closer to an answer.”

‘I am so, so sorry. I gave you the wrong results, I read them wrong, you are actually not pregnant.’ I remember thinking, oh no, here’s where the skeleton comes out of the closet.’: Couple given wrong results during infertility struggle, finally experience ‘miracle’ pregnancy

“He then looked at us, and said, ‘What are you talking about?! No sperm??’ ‘We were told there was no sperm,’ I said. I burst into tears, not believing that what he was saying was true. It couldn’t be true.”

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