Raredisease Stories

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?

Hello my name is Saida and I am proud to be authentically uniquely ME in every single way and area!!! I am proud to be ME This is my story!!!!

My life dealing with a Rare Disease called Sarcoidosis.

The Science of Listening is a series of essays detailing the diagnosis and treatment journey for Ehlers-Danlos syndrome.

Hello my name is saida mahoney I am 25 years old and in this book I will be talking about everything and taking about my healing and recovery journey as well and so much more I will be talking about how I became a stronger advocate for not only my disabilities but also for my mental health conditions my rare diseases and my medical conditions and so much more etc I will be talking about many other things as well I never want anyone to struggle and feel alone

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.

Hi and Good day everybody! This is my newly created story. I apologize in advance if you notice any incorrect grammar or get confused in some parts of the story. I hope you like it. Heheheh. Rain Walton is a 12th-grade girl who suffers from a rare and unusual disease. If she gets wet in the rain, she becomes weak and could even die. Unfortunately, there is no cure for her condition, which has made her a target for bullies. However, everything changes when she meets Liam Crawford, a boy who loves the rain and will bring joy to Rain's lonely heart.

Hello my name is Saida Luvenia Mahoney I am 25 years old and I live in Oakland California This is a story about my struggles of the diagnosis I have and so much more Diagnosis I have all the way from when I was a baby up to my adulthood I am a Survivor of Self Harm I am a Survivor of Suicide attempts I am a Survivor of Many other things as well This story will also talk about all the challenges I have faced and dealt with and so much more etc. I am writing this story to help bring awareness to become a strong advocate and raise awareness worldwide for the disabled community and those who have rare diseases, chronic medical conditions and mental health disabilities as well and more This story will be pretty long but worth the read I hope you like my story I am writing if you want to learn more about me or contact me my Twitter is @WONDERGIRLSAIDA and @AHERONAMEDSAIDA Thank you so much for reading Much Love, Saida

A AOT OC

James Williams was fine. He had a family, a roof over his head, and food in his stomach, which was more than other people have. He divided his life in two parts. Past and Present. Yet, he soon learns that heartbreak, no matter what form, will just be the tip of the iceberg. Like Dante he first go through the Inferno and Pugatorio, and while blindingly steps one feet in front of the other in that seemingly meaningless journey, he will learn who will there for him until the end. *blurv* *update every wednesday*

[1964 TV Universe] Morticia Addams' beloved husband Gomez has fallen inexplicably ill. Barely saved from his close brush with death, she and the rest of the family must cope with the devastating and disabling results of his illness. As time passes, we check in with his recovery and see how caring for him impacts the family. This story/play was originally written as a project for Rare Disease Day 2018, but was then abandoned. It's now been rejigged a little, and is being put up almost a year late. But hey, Rare Disease 2019 isn't that far away.

Poetry Related to Narcolepsy

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)

This book will celebrate and honor The journey of discovering and embracing my 21 LGBTQIA identities and The deep emotional impact of PFLAG's acceptance, education, and community and the importance of it. The connection between my childhood experiences and How my gender dysphoria and gender euphoria shaped my understanding of myself and so much more etc. The power and importance of inclusion, acceptance, and love in the LGBTQIA and disability communities

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?

Advocating for newborn screening in WV

Paige Briggs is a 15 year old girl who looks exactly like a normal human being, but she suffers from a rare allergy called Aqaugenic Urticaria, in other words, water allergy... Paige was diagnosed when she was 7 years old. Although she's had to cope with this allergy, it doesn't stop her from believing and trusting in God. How will Paige's story end?

When my son Nilan was eight months old, I heard words no parent is prepared for: "Your child has FOXG1 syndrome." In an instant, the life I had pictured blurred into something unknown - a path with no map, no promises, and no easy answers. But this is not a story of loss. It's a story of love, resilience, and finding joy in places I never thought to look. From sleepless nights to hard-won milestones, from quiet fears to loud celebrations, I share the truth of raising a child with a rare genetic condition - the heartbreaks, the triumphs, and the lessons that shape us. This is our journey, moving forward not in leaps, but in precious, determined steps... one step at a time.

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...