rare disease

‘A month before my wedding, I woke up unable to see 2 feet in front of me. I chalked it up to a fluke. I was so naive.’: Woman shares emotional battle with Uveitus, ‘I’ll do whatever it takes to persevere’

“I woke up with blood-shot eyes. Everything was a blur. ‘This is going to go away. It can’t get worse.’ This is when my eyesight started to deteriorate. Here I was, 26 years old, a month before my dream wedding day. I had the most beautiful wedding dress, and desperately wanted to look good in my wedding photos. ‘How could this be happening to me?’ I was so angry at the world.”

‘What do I need to do to make it?’ I walked through those doors, standing at 315 pounds with a disability I hid. ‘Let’s give this a shot.’: Woman with Klippel Trenaunay Syndrome finds peace in chronic illness

“I was spending every day off work as a first responder on a recliner or in bed, surrounded by pain and fatigue. My disease was here to stay, after it had been silent for 12 years. I’ve always been hard-headed. ‘I will do it on my own.’ But when my health became something I could not hide anymore, I knew it was time to share it, despite the fear of what they may judge.”

‘My brother came to me in a dream last night and told me he was in heaven. He isn’t in pain anymore.’: Mom of 2 children with rare skin condition loses youngest unexpectedly, ‘Nothing could be done. My baby was gone forever.’

“’They’re here!’ I saw my husband staring with a scary look on his face. Everything went out of focus. I walked to his bed, and I sank to the floor. He was gone. I screamed, doctors came running in. They performed CPR but because of his disease, it tore all the skin from his chin to his chest. They told me his heart stopped due to complications. I later found out he was given fentanyl during the flight.”

‘Hey, you look swollen by your collarbone,’ my coworker stopped me. I groaned. I had a huge trip planned. The pain skyrocketed.’: Young woman lives with a chronic desmoid tumor, advocates so her ‘struggles can become guidance for someone else’

“My diagnosis began in a yoga studio. I noticed something was wrong when I couldn’t hold my balance easily. I developed a tight pinching and dull ache in my right shoulder. As I came out from anesthesia, my mom asked the doctor how it went. ‘Well, confusing,’ he replied. ‘The cause of your swelling and pain remains a mystery.’ I was stunned. I ended up in a surgeon’s office. ‘This is suspicious for a sarcoma.’ I had to interrupt. ‘I’m sorry, you said sarcoma? Do you mean I have cancer?’ I stammered in disbelief.”

‘I’m sorry. Eva won’t make it.’ I sat, waiting for the doctors to stop the bleeding in her brain. The damage was too extensive.’: Mom pens letter to past self 13 months after daughter dies of Immune Thrombocytopenic Purpura

“You need to listen to the doctors. You need to breathe. Right now, you can’t see past those hospital walls. One day you will. One day you’ll see the beauty in all they did for your baby girl. One day you’ll be forgive the neurosurgeon who you found so blunt and cold. One day you will be thankful Eva was in your arms, and not on an operating table, when that last breath came.”

‘I don’t see arms.’ The sonographer takes too long rubbing the wand over my belly. Everything goes silent.’: After ‘repeat miscarriages,’ mom births ‘miracle, rainbow baby’ with TAR Syndrome

“We told our family about Nicholas’ lack of arms. ‘Do you think you should keep him?’ That question BROKE my heart. Having to confront the fact others disagreed with me was as painful as my miscarriages. Was I sentencing him to a painful life? People who didn’t know would talk of all the things he’d accomplish. It all felt like lies.”

‘As my daughter was giggling, bursting with love in the next room, I was learning she wouldn’t be growing up at all.’ Mom’s 18-month-old daughter diagnosed with ‘Childhood Alzheimer’s’

“The phone rang. I grabbed a notepad, a pen, took a deep breath. How do you prepare yourself to answer a call with the results of whether your 18-month-old daughter is going to die? My mind shut off. All the air left the room. ‘Very serious, no cure yet, not sure, lots of research.'”

‘No eyebrows and eyelashes,’ she said. I hadn’t noticed his lack of hair. She ran her hand across his sweet face. There was a concern.’: Mom learns of son’s rare CFC syndrome disorder, but keeps ‘pushing forward’

“Our midwife came in and hugged me. ‘How are y’all doing?,’ she asked. It was all too much. What did she mean by ‘abnormalities?’ I stopped her and asked. That’s when the rest of the conversation disappeared from my memory. I would NEVER let this define Nolan.”

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