condition

‘Every time I gave birth, I awoke the dormant beasts inside me.’: Mom of 3 shares journey to Ehlers Danlos Syndrome, Lupus diagnoses

“I started wearing sunglasses indoors. My hair was falling out in chunks, my gums bleeding. Sounds hurt. The very smell of air made me sick. I was a shell of myself, withering away, barely hanging on. But then I thought of my little girl. She was so small, not even talking yet. How would she remember me? Who would teach her to do her hair? I had to stop planning my goodbyes, and start fighting.”

‘I was strapped down. ‘What if I feel him cut into me?’ My husband wiped away the tears that ran down my face.’: Mother says newborn’s delivery was the ‘most terrifying day of my life’ after HELLP syndrome diagnosis

“I must have looked terrified. The nurse said, ‘Don’t worry, this may be your first time, but it’s not our first time doing this.’ I strained to hear what the doctor was saying but couldn’t make it out. They’d occasionally laugh so I thought everything was going well. I felt a tug and I suddenly felt hollow. I remember asking, ‘Is she ok?’ She was only 2 pounds. The tiniest baby I had ever seen.”

‘Life with four children with albinism has been quite the adventure.’: Family adopts 4 albino children whose ‘unique, rare’ condition makes ‘our hearts full’

“We stick out in a crowd and draw attention anywhere we go. There are occasions when the pointing, stares, and whispered comments are invasive and annoying. People reach out and touch our children’s hair without asking. We’ve even had to step in and stop strangers from taking selfies with our kids!”

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