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Struggle to Eat with PV & UC

Pemphigus Vulgaris (PV) is an autoimmune disorder that involves blistering and sores of the skin and mucus membranes. They are basically open sores that won’t… Continue reading Struggle to Eat with PV & UC

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Every day a new challenge

I’m Jasmina Stojkovska from Prilep, Macedonia.I have acromegaly diagnosed almost 13 years.My path is thorny and difficult.The first signs of illness I had in 2001.Then… Continue reading Every day a new challenge

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Atypical Trigeminal Neuralgia

About 18 months ago I was diagnosed with atypical Trigeminal Neuralgia – the rare form of a rare disease. I went from 100 miles an… Continue reading Atypical Trigeminal Neuralgia

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My beautiful brave warrior !!

My beautiful daughter Kalani Grace was diagnosed with a rare disease at 20 weeks during my sonogram check up. I went for my sono to… Continue reading My beautiful brave warrior !!

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PCCA2

On May 12 2012 my precious angel Breonna passed away at the age of 6. At this time she was undiagnosed, almost a year later… Continue reading PCCA2

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Ashlynn and Battens Disease (Cnl3)

Our little 6 year old girl was just like any other, energetic loving and fun. Though the end of last year the schools noticed her… Continue reading Ashlynn and Battens Disease (Cnl3)

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Brendan’s Digeorge Journey

Brendan was born 8/13/13. He weighed 6 pounds 13 oz at birth. He dropped down to 6 pounds 4 oz in the hospital. He couldn’t… Continue reading Brendan’s Digeorge Journey

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Hereditary multiple extostosis. My rare disease.

I would like to thank everyone for making this day available to those of us who suffer from a rare disease. When I was five… Continue reading Hereditary multiple extostosis. My rare disease.

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