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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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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Living with Jarcho Levin Syndrome

Living with Jarcho-Levin syndrome This is the story of Roberto “Papo” Lugo born August 21,1992 . My son Roberto just celebrated his 1 9th birthday… Continue reading Living with Jarcho Levin Syndrome

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In Spanish: malformación de Chiari

Buenos días: Me presento mi nombre es Marta Fdez. De Gamboa soy la presidenta de la Asociación Nacional Amigos de Arnold Chiari. Cree en el… Continue reading In Spanish: malformación de Chiari

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Kicking SPS – Fight On !!!

I have Stiff-Person Syndrome (SPS), a rare neurological disorder affecting about one in a million people. In 2006, I discovered I had a broken back,… Continue reading Kicking SPS – Fight On !!!

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