Raredisease Stories

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

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?

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?

“I don't handle things very well.”

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!!!!

Poetry Related to Narcolepsy

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?

Advocating for newborn screening in WV

This is my submission to the #sidehustle contest for Nickelodeon and Wattpad. When a life-threatening disease plages a family member, just how far would you go to help?

Since 2012 nothing is like before. An event changed the life of Mia, take her hand and go with her in a world where time has stopped.

My life dealing with a Rare Disease called Sarcoidosis.

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

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

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

"Hello?" "This is Mission hospital. We found a cure for Arorah' s disease we need her to come in as soon as possible." "Umm..."I ball my fist up while looking at Arorah's lifeless body. "I'm afraid you're too late". I begin to cry and then hang up.

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.

Random thoughts throughout the day.

Hello My name is saida mahoney I am 25 years old and this book is all about myself living with my Congenital Heart Disease and many more things I have learned how to fight harder than ever Living life with 3 rare chronic diseases is hard but I am resilient and I won't back down and I will not go away Quietly