undiagnosed

‘He’ll have severe disabilities.’ Each smile is priceless. We have an even greater appreciation for the ‘little things.’: Mom advocates for son with undiagnosed condition, ‘He’s one of a kind’

“Our 6-week-old son lay in a hospital bed next to us, all hooked up. The prognosis was grim. Watching your child have seizure after seizure, knowing there’s nothing you can do, is gut-wrenching. He might not understand what’s happening, but he’s so strong.”

‘My cheek was swollen. The doctor said, ‘I’ve never seen anything like this before. Your life expectancy is 6 years old.’: Woman gets Facial Infiltrating Lipomatosis diagnosis after 22-year battle

“We were told, ‘The swelling must be from the position she slept in. It’s nothing. It will go away soon.’ Weeks went by, but nothing changed. When puberty hit, my face was growing faster than I was. I had unexplainable headaches and nosebleeds. I was sleeping all day long. Everywhere I went, I got stares, whispers, and pointing fingers.”

‘My sister called. ‘Rachel is thirsty. I think she has heat exhaustion.’ She stopped breathing. I was on the phone as they started CPR.’: Mom loses daughter to undiagnosed Type 1 Diabetes

“She was moodier than usual, but she was turning 12. ‘Hormones, right?’ She started complaining about leg cramps and throwing up after running. When the coroner’s office called, we were told, ‘You missed the symptoms.’ Rachel was gone, and she was not coming back.”

‘I kept getting UTIs. My male doctor said, ‘Do you think the pain might be ALL IN YOUR HEAD?’ I was mortified.’: Woman with chronic urinary tract infections urges ‘you are not alone’

“I’d receive a 3-day course of antibiotics and be sent on my way. It would clear up, but come back with vengeance. I was told it was ‘just because I was WITH my boyfriend.’ Fair enough, sex can be a cause, but what did other people do? Stay single for the rest of their life? I was at a loss. All the doctors suggested I was exaggerating.”

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