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My medical life

Hi my name is Owain I’m a 16 year old boy from Milton Keynes and I have a condition called Noonans syndrome. Noonan syndrome is… Continue reading My medical life

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I’m sad

i have Duchenne Muscular Dystrophy

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Rarest Rylee

A few weeks after I was born, I refused to feed. My mommy thought there was something wrong with her breast milk and decided to… Continue reading Rarest Rylee

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Mi diagnóstico a mis 28 años

Soy Luciana, tengo 42 años y me diagnosticaron Síndrome de Muckle Wells, una EPOF que se caracteriza por ser un síndrome autoinflamatorio que tiene muchos… Continue reading Mi diagnóstico a mis 28 años

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A Warrior Named Remi

Meet Remi Sophia Savioz, a true warrior! Like many diagnosed with a rare disease, Remi has faced a lifetime of challenges. But she refuses to… Continue reading A Warrior Named Remi

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Hydrolzine induced ANCA Vasculitis

I received news that I had a very rare form of Vasculitis in 2020. It was caused by a blood pressure drug called Hadrolozine a… Continue reading Hydrolzine induced ANCA Vasculitis

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A Diagnosis that Changed Everything

I still remember the moment the doctor told me I had IgA Nephropathy. The words felt heavy, foreign—like a storm I hadn’t seen coming. I… Continue reading A Diagnosis that Changed Everything

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Ana is rare

Ana is considered a medical complex child, with multiple diagnosis, and among these, she has two that fall into rare category: Neurofibromatosis type 1 (NF1)… Continue reading Ana is rare

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Mollie’s ARPKD Journey💜

This is Mollie 💜 She was born with ARPKD (Autosomal recessivepolycystic kidney disease) This was not discovered until mollie was 3 months old. Mollie is… Continue reading Mollie’s ARPKD Journey💜

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