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История одной болячки

История №3 Рассказывает мама о сыне с диагнозом акромегалия Как это начиналось? Мы не виделись с ним около года, и я была поражена тем, какой… Continue reading История одной болячки

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what is klippel feil syndrome and why is it so rare

My name is Natalie i am 32 & i got diagnosed 3yrs ago with klippel feil syndrom & because it’s so rare it’s hard to… Continue reading what is klippel feil syndrome and why is it so rare

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Wegener’s Granulomatosis _ Melbourne

My name is Freda and l have a rare medical condition called Wegener’s Granulomatosis / Micro Polyangitis also Von Willebrand’s Disorder all these disorders are… Continue reading Wegener’s Granulomatosis _ Melbourne

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Our Little Man and FPIES

Samuel was diagnosed with FPIES at 11monthes; although he had chronic illness for months prior to the diagnosis. Samuel is our 4th child, 2 of… Continue reading Our Little Man and FPIES

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Georgie Pie’s Brighter Future

We spend most days praying, fundraising and hoping for a brighter future for our beautiful daughter Georgia. Georgia is three years old and just four… Continue reading Georgie Pie’s Brighter Future

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Primary immune deficiency disease

I was born in 1972 with a primary immune deficiency called hypogammaglobulinemia which is a deficiency of the main antibody defense against bacteria. No one… Continue reading Primary immune deficiency disease

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Amanda’s Story

Amanda was born a normal beautiful baby girl weighing in a 6 pounds 8 1/2 ounces and 19 inches long in 1985. She progressed normally… Continue reading Amanda’s Story

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Symptomatic Tarlov Cyst

Classified as a rare disease sufferers like myself are entirely frustrating by the lack of knowledge on this issue we fight against GP who scoff… Continue reading Symptomatic Tarlov Cyst

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Cure for uncommon autoimmune disease

Symptoms: swollen and crack lips, mucous membranes ulcers(oral and virginal), swollen legs, weak joints Started: 1-jan-2012 It was started with an insect bite-like mark on… Continue reading Cure for uncommon autoimmune disease

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