My Story with Niemann Pick C

My name is Christian, I’m 44 years old, and I live in Florida. My father is Swiss and my mother is Brazilian. I was born in… Continue reading My Story with Niemann Pick C

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Overcoming Disease with Diet

I am a recovering acromegalic – my tumor grew very slowly, over 35 0r 40 years and I believe this was because I became a… Continue reading Overcoming Disease with Diet

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Ultimate ph Warrior

my name is Daniel. I was diagnosed with Pulmonary Hypertension in 2007. It wasn’t until 2010 that I found out that my youngest half-brother was… Continue reading Ultimate ph Warrior

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Breaking down barriers and stereotypes, living with Addison’s disease

I have been suffering from rare autoimmune diseases related to the adrenal cortex.Since i was a child,and I have had to overcome many barriers and… Continue reading Breaking down barriers and stereotypes, living with Addison’s disease

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Overcoming everything

Hi, I’m Asher. I’m now 7 3/4 months old! When I was 6 weeks Doctors told my parents I was about to die, and the… Continue reading Overcoming everything

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Xander’s Journey finding a cure

My name is Yohanna. I have a 3-year-old name, Xander. He was born healthy, and everything was great until he reached six months. I noticed… Continue reading Xander’s Journey finding a cure

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EEE Can’t Kill Me

In August, 2019 I was taken by ambulance to the hospital with seizures. I ultimately had a 22 min seizure, was intubated, and spent a… Continue reading EEE Can’t Kill Me

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Almost 18 and still going

Chiari malformation type , idiopathic intracranial hypertension, Eds, gastroparesis, All my life I’ve had headaches and pain in my joints. But when I was 12… Continue reading Almost 18 and still going

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My daughter Leah

Easter Holidays 2019 my 8 yr old daughter woke up with puffy eyes. What at first we thought was allergies turned out to be the… Continue reading My daughter Leah

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