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My son

My son was born with various problems had times in hospital where doctors baffled to find a cause for his being unwell. Had junior rheumatoid… Continue reading My son

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douleurs comprises

Cela fait de nombreuses années que je souffre et que je n’arrivais plus à faire quelques gestes du quotidien comme me sécher les cheveux avec… Continue reading douleurs comprises

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How I found out about me

My daughter had a fever 40 degree celcium, it repeated several times. After couple years she had herpes in whole body, we go to doctor.… Continue reading How I found out about me

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We hope the life story of our little boy just begins

Maxim was born on August 22, 2021. As parents, we were very happy to meet our little boy.Our son developed according to his age. Every… Continue reading We hope the life story of our little boy just begins

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Our FPIES Journey

My daughter Lily was born January 2024 perfectly healthy. By 4 months old, we started to think something might be wrong. She had concerning diapers… Continue reading Our FPIES Journey

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A story called Atranasferrinemia

Hi everyone,I am Marco, I am 31 years old and since, almost I was born from the age of 2 years old I have lived… Continue reading A story called Atranasferrinemia

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Callie’s story

After a normal pregnancy and delivery, our baby daughter Callie began experiencing seizures at just 6 weeks old. We were terrified and had no understanding… Continue reading Callie’s story

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Eye Believe in A Cure

I’ve been diagnosed with Uveal Melanoma. There is no treatment. 5 yr life expectancy. I’ve been trying to get care, from the only MD in… Continue reading Eye Believe in A Cure

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What is “normal” anyway?

I’m Kallie and I live with Neutropenia, alopecia, POTS, and deep infiltrating endometriosis 2. As a child and teen, I would get a simple paper… Continue reading What is “normal” anyway?

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