Mysterious Genetic Condition Complicates Life for Milo: Family Reaches Out

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Our beautiful son, Milo, was born in December 2010. He has had a complicated life since then, with six surgeries and undiagnosed global developmental delays. These have left him significantly behind his typically-developing peers. He cannot yet walk independently, does not yet communicate consistently with […]

UK Girl Dies After Doctors Fail to Diagnose Addison’s Disease

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A “VIVACIOUS and lively girl” died after her rare medical disorder went undiagnosed by doctors. Clare Cooper died aged 24 in February 2013 from Addison’s disease, a rare disorder of the adrenal glands affecting the production of the hormones cortisol and aldosterone. An inquest into […]

Undiagnosed with Developmental Milestones, Parents of Noah, 6, Still Search for Answers

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Our son, Noah, just turned six. He is a bright, happy boy who loves to swim, read books, and play on his iPad. He uses a walker, or a wheelchair, to move around – he is also a very fast crawler. Noah has an app, […]

Undiagnosed Children’s Support Group Meeting in California

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“I could not find a local support group for families with undiagnosed children,” said group leader, Caroline Cheung. “It is a lost feeling not knowing where we are going and what to expect or plan for. I have found it helpful in many ways by connecting with […]

Lizzy Undiagnosed: Looking for Answers

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My name is Lori Sedlachek, mother to Lizzy who is 3 years and 4 months old. She is basically non-verbal. We had her social skills evaluated at 7 months, fine motor at 11 months and gross motor at 15 months. She is babbling more. Though […]

Groundbreaking Documentary on Undiagnosed Disease Seeks $150K in Crowdfunding to Change Future of Medicine

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Millions of people worldwide live everyday with perplexing, undiagnosed illnesses that remain a mystery to their doctors. For the first time ever, this issue is the subject of a feature-length documentary titled Undiagnosed: Medical Refugees. From the position of being an undiagnosed patient and clinician, […]

I Have a Monster Called RSD–But RSD Doesn’t Have Me!

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In 2000, at the age of 13, I was diagnosed with a monster: RSD. Reflex sympathetic dystrophy (RSD) is characterized by a group of symptoms including pain (often “burning” type), tenderness, and swelling of an extremity associated with varying degrees of sweating, warmth and/or coolness, […]