“I was covered in hives. My cheeks were flushed, and I gasped for air. ‘I hoped this was the answer.’ I was allergic to my last shot at remission. It had all been for nothing.”
‘It was my last chance.’ I burst into tears. I was only 22 and felt like my life was over.’: Woman details journey with Nephrotic syndrome, ‘I’m on the path to healing’
‘You’re making it hard. Please leave.’ Tears filled my eyes. This was my doctor I’d known for years. ‘I’m not faking!’: After 23 years, woman finally diagnosed with 3 rare diseases
“I still remember the sound of saline gurgling at the base of my brain. Why does nobody believe me? ‘Finally,’ I thought, ‘We found the smoking gun.’”
‘Why me? What did I do to deserve it? ‘Even with all these questions, I want you to know I forgive you.’: Man pens powerful open letter to bullies, ‘You still have the power to change’
“Dear Bullies, I want you to know what you did to me was and never will be okay.”
‘I can’t do this another day!’ My hands were rotten, my skin so red and thin I could see my bone through it.’: Teen OCD survivor becomes mental health advocate, ‘There’s light at the end of the tunnel’
“’I found her blue,’ my nurse explained. What? How bad was this? My family watched in horror as I destroyed my body and soul. Then something flipped. I just wanted to go home.”
‘He swiped a tiny nibble from his brother’s peanut butter sandwich. That day, our lives changed forever.’: Mom shares hard-won lessons from experience and allergy community
“People will comment, ‘We don’t have allergies but…’ Honestly? We were given instructions to ‘avoid peanuts!’ Epi doesn’t solve the reaction. It’s a stopwatch giving you time to get to a hospital.”
‘They don’t live long lives.’ She had a seizure and quit breathing. Nobody could give me an explanation.’: Woman births baby with Holoprosencepaly, ‘This journey is not for the faint of heart’
“One day, she stopped eating and cried most of the morning. I thought they would send me home with Tylenol. The doctor came in and said, ‘Pack a bag and go to the hospital.’ I had to go full steam ahead.”
‘He sounded congested all the time. ‘He’s just building his immune system.’ This cold landed him in the PICU, intubated.’: Mom advocating for Spinal Muscular Atrophy says, ‘Every single thing is a battle’
“He was always sick. When the doctor was listening to his lungs, he noticed his tongue was twitching. They stuck a probe into his muscles. ’Don’t google the disease.’ Of course, I immediately googled it. I shouldn’t have.”
‘She wouldn’t take a bottle or sippy cup. The nurse said, ‘That can’t be right.’ Something was wrong. This was my fault.’: Mom advocates for daughter with rare Chung-Jansen Syndrome, ‘Listen to your instincts’
“A voice inside my head was telling me something was up. She wouldn’t eat and couldn’t roll over. The doctor said, ‘She has barely grown in 4 months.’ I felt a wave of grief. I knew I had to advocate for her.”
‘You may only have use of your eyes and voice.’ I was told, ‘You should live a less ambitious life.’: Woman with GNE Myopathy says ‘knowing my body is temporary has caused me to truly live’
“I’m told, ‘You will never see research being done because you’re too rare.’ I have lived my life with fear, against a silently ticking clock.”
‘What are we supposed to do?’ It must be my fault. I turned to Google for answers and was terrified.’: Mom has surprise Down syndrome baby, ‘Life looks a lot different now than it did 5 years ago’
“She asked us, ‘Did you know he has Down syndrome?’ I was a little shocked. We told her, ‘No, we haven’t noticed.’ She simply said, ‘Well, he does,’ and walked straight out of the room. Her tone and her demeanor were so condescending. I instantly felt fear, anger, and guilt wash over. There were no offers for resources, no books or pamphlets, no direction on what to do next.”
