rare disease

‘Ma’am, have a seat.’ I wanted to scream, ‘Look at the scar down my chest, I’m not making this up!’ but it was too late. They didn’t believe me.’: Woman finally diagnosed with invisible illness Myasthenia Gravis after 6-year battle  

“I was written off as hormonal. My husband frantically demanded I be intubated. He kept screaming, ‘The oxygen levels don’t matter. She’s in a Myasthenic Crisis!’ I tried to take a breath. It was too late. All my muscles started twitching. I was flopping around on the hospital gurney uncontrollably. Suffocating. I was dying and no one was listening to my husband’s desperate pleas. I heard Code Blue called over the intercom and faded away. I didn’t wake for 2 weeks.”

‘I ignored my trembling. ‘It’s rare and mainly ends in heart failure.’ I lost count of ‘friends’ who vanished.’: Woman with Friedreich’s Ataxia graduates law school despite prejudice, ‘I’m no longer ashamed’

“When I was a teenager, I noticed balance issues that worsened over time and left me confused. I knew it was more than clumsiness. I wasn’t able to walk in a straight line, wear high heels, or dance without falling. I was told, ‘There is no treatment in sight.’ I isolated myself, ashamed of what was happening. I started to give up hope. It took FIVE years to get answers.”

‘I won’t let you die, Gunnar.’ I was heading towards end-stage illness, and an end to my fight.’: Son of quarterback, Boomer Esiason, advocates for others with cystic fibrosis, ‘I now live the miracle’

“I was 22 years old and feeling lonelier by the day, as my disease progressed faster than I could have imagined. One day in particular, I broke. I cried and cried. My mom saw it happening through the kitchen window and rushed to me in the driveway. She hugged me. I still think about that hug.”

‘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.”

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