Raredisease Stories

Born with Spinal Muscular Atrophy Type 1, 18-year-old Louis Tomlinson relies on machines and 24/7 care for even the simplest tasks. Once full of stages, lights, and laughter, his world is now defined by blinks, beeps, and the unwavering devotion of Harry, Liam, Niall, and Zayn. This story follows the band as they navigate heartbreak, hope, and the quiet triumphs of caring for someone they love. Through every challenge, every small victory, and every tender moment, they prove that even when life slows down, love never fades.

How would you feel if one day you knew you have a rare disease? Would you choose to get through it alone and push away the one you love? The love you've been waiting for your whole life. A kind of love that is perfect but came at the worst part of your life. This is a story of a girl and the way she would overcome all her insecurities brought by a rare disease she never thought she would have. How would the people that she would meet help and deal with her? Is it beyond her reality? Everything? This is not your typical love story. It's about love, music, family and friendship. And Drew? She's unusual"

Jayden and Jayson are twin brothers. They were born miraculously. One of them had a very rare disease, and only can be cured by a hug of his brother. They always got each other's back. One day, they fell in love with the same girl. Will they still love each other and got each other's back or end up with a war between them? Let's find out...

Switched at birth? More like SICK since birth. My journey from infanthood to now, with many chronic illnesses ✨ #EndChildhoodPain - Christina Published May 2018

the girl, who wasn't given a tomorrow , named Briar-Rose just wanted to feel one thing. That one thing that was her favourite scent but she was never allowed to because they all wanted to prevent from what happened to her. (Regular updates)

An Iwaizumi Hajime x Oikawa Tooru AU Soulmates. That's one word to describe the relationship between Oikawa and Iwaizumi. Ever since they met in their neighborhood, they're never seen separated. However, Tooru develops a rare condition with no known cure that threatens to change their relationship. What will happen to them?

Hello everyone my name is saida and in this book I will be talking about how I fought all the big long battle's of my Rare Diseases and my mental health conditions and won the battles to get through everything and made it onto the other side of life and so much more etc

My life dealing with a Rare Disease called Sarcoidosis.

"Miss. Ryder," said Dr.Yoel, "We sent your blood to the lab and I am very sorry to inform you that we found a problem in your nerve-system causing a rare disease called xxx." "What do you mean Doctor?" I asked, confused "What I mean is that you have a generic disorder causing you to not feel pain-" he continued, "This is because the nerves in your body that are supposed to send the feeling of pain to your brain are not working." ~~~ Blaze Ryder is the girl everyone wants to be; she is sweet, kind, intelligent and beautiful on the inside and out. But when she finds out that she has xxx everything changes and she is determined to find a cure for this disease and nothing, no-one will stand in her way. Alec Royce, bad boy who everyone is afraid to get close to is in the CIA. He is in charge of a very dangerous case that needs someone indestructible, someone who feels no pain. He needs her, she needs him. Both need each in order to make it out alive.

This is the story of my life so far. Stripped down and raw. The truth and the pain. Illness and recovery. Choosing between life or death. With just one of my nine lives left before the age of 30, it's all I need to live a great one.

Advocating for newborn screening in WV

In 2014, I was diagnosed with avascular necrosis of the hips. That's when my nightmare began. What is avascular necrosis? Avascular necrosis (AVN), also known as osteonecrosis of the femoral head, occurs when the blood supply to the bone is decreased. This interruption in blood supply causes small cracks and breaks in the bone. If the AVN is left untreated, the bone will eventually die and collapse. Over 20,000 people acquire AVN every year, typically between 20 and 50 years old. It can be caused by a number of factors, such as damage to the bone's blood supply, or injury to the bone itself, which can damage blood vessels and precipitate AVN.

Hello My name is Saida Mahoney I am 24 years old and I live in Oakland California This book is about working hard to make your dreams come true and not giving up I want to help others who are struggling with developmental disabilities, chronic medical conditions, physical disabilities and mental health disabilities Everyone dreams can come true no matter what the circumstances are in life You can do it All you have to do is Believe and Fight Hard Keep your head held up and high!!!

A doctor and a terminally ill patient fall in love. How does the complications of life complicate their relationship?

Poetry Related to Narcolepsy

Hello everyone my name is Saida and in this book I will be talking about all the things I have proudly overcame and accomplished and so much more etc

The story of a girl battling multiple chronic conditions. She was 13 when her symptoms began, and didn't think much of them at first. But little did she know how much her life would actually change.

They gave her six months to live. But what if the real danger didn't start until she tried to survive? Alina Reyes has always fought to stay in control-even as her mysterious illness chips away at her strength, her memories, and her future. When a fatal diagnosis leaves her with one last, desperate option, she agrees to join a secretive experimental trial at an isolated mountain facility. The treatment might save her life. But it might also cost her everything else. Inside the high-tech compound, Alina meets Dr. Elias Vance: brilliant, closed-off, and hiding a past that could ruin them both. As the trial begins, strange things start happening-hallucinations, disappearances, encrypted files, and whispers of a darker agenda beneath the surface of the so-called cure. The deeper Alina digs, the more she realizes: This trial isn't just about healing. It's about control. And in a place where your memories can be rewritten... How do you know what's real?

The state of being rare is not rare at all. Hebi, the girl whom deprived of life's most necessity. Water. Thinks everything she was limited to was already ordinary. She thought she already has the peace to live when they fled from all the doctors who took advantage of her condition but their family doctor who spread about her disease had her followed. (On-going)

She had been drowning constantly even though she can't even touch the water. Sia had been fighting all her life, trying not to be tossed away by the harsh tide. She was born allergic to water. She can't even touch a drop of it nor shed a bit of tears. She enclosed herself in a bubble that only herself can enter. Caleb-- He found peace whenever he is in the water. He can almost literally live in it. However, an accident changed everything. As a gold medalist, world star swimmer, how can he get away from hi most beloved sports now that he can't even get near the pool anymore? What is the future waiting these two individuals; one who long to enjoy water for even a little while the other dreaded water which he once loved the most. Can they make a clearer path in their lives or will they both drown together in the flood that had been brought by their awful past life events?