Rare diseases

‘Sedated and wearing diapers, I flew 3,000 miles during a global pandemic to have a life-saving surgery.’: After 23 years of not being taken seriously, woman finally diagnosed with 3 rare diseases

“The world was falling apart as a top neurosurgeon prepared to piece me back together. I watched the protests from a small TV in our hotel room and reflected on how I fought for 23 years to be heard by men and women in white coats who minimized my disabling symptoms and refused to acknowledge my struggle was real.”

‘I looked straight at my husband. ‘Why isn’t he crying?’ He was like a wet sponge. Within seconds, he coded blue.’: Mom births baby with centronuclear myopathy, ‘I will do everything in my power to give him a full, happy life’

“My husband gripped my hand firmly and hugged me. ‘Please take care of our boy. Do anything you need to make sure he’s going to be ok.’ I reached out to hold his little hand. He couldn’t even grip it. His eyes were unable to open. He couldn’t close his mouth. He just lay there. The geneticist told us, ‘These types of cases very rarely live to see their 6-month birthday.’ He then shook my hand and left. I was in literaly hell.”

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