Raredisease Stories

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

Happy rare disease day!!

"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.

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

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.

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.

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 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?

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?

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

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?

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.

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*

chronic recurrent multifocal osteomyelitis- (CRMO) also sometimes called chronic nonbacterial osteomyelitis (CNO), involves inflammation of the bone. Usually, inflammation is a normal process. It causes pain, redness, and swelling. It is the way our immune system protects itself from infection and germs. In CRMO, however, there is no infection. this is the disease that dasiy Mclee gets diagnosed with after 3 years of great pain in her leg. this story follows the young girls journey thro trying to balance figuring out whats wrong, art class, school, and her best friend. this will be a more sensitive book compared to my others and will have topics that might be relly triggering for some people so be warned.

“I don't handle things very well.”

A AOT OC Book

What I've gone and are going through