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Daily Archives: January 2, 2018

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It May Surprise You How CSF Leak Changed David’s Life
Source: Pixabay

It May Surprise You How CSF Leak Changed David’s Life

  • Post author:Samuel Sachs
  • Post published:January 2, 2018
  • Post category:CSF Leak

David Baldwin is a 37 year old man from Ross-shire. Based on appearances, he should be living a normal, healthy life. Appearances can, however, be deceiving. David suffers from Cerebrospinal…

Continue Reading It May Surprise You How CSF Leak Changed David’s Life
What To Do With The Results Of Genetic Testing
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What To Do With The Results Of Genetic Testing

  • Post author:Al Pendleton
  • Post published:January 2, 2018
  • Post category:Gaucher Disease/Rare Disease/Tay-Sachs Disease

Despite the obvious cliché nature of the old adage, knowledge really is power. Technology and medical advancements give doctors and researchers more information than anyone could have fathomed even a…

Continue Reading What To Do With The Results Of Genetic Testing
8-Year-Old Boy Selected to Meet His Idols of Passed Boston Bruin’s Hockey Players
Source: Pixabay

8-Year-Old Boy Selected to Meet His Idols of Passed Boston Bruin’s Hockey Players

  • Post author:Meagan Fulps
  • Post published:January 2, 2018
  • Post category:Hereditary hemorrhagic telangiectasia

Charlie Druken's dreams came true when he was selected to the drop the puck at the Boston Bruins' Alumni game recently, reported The Telegram. It was a night the eight-year-old…

Continue Reading 8-Year-Old Boy Selected to Meet His Idols of Passed Boston Bruin’s Hockey Players
This New Discovery Could Improve Outcomes for Spina Bifida
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This New Discovery Could Improve Outcomes for Spina Bifida

  • Post author:James Moore
  • Post published:January 2, 2018
  • Post category:Rare Disease/Spina Bifida

Doctors always emphasize the importance of sleep for newborn babies, but some babies may have greater challenges to face when it comes to getting a solid night of sleep. A…

Continue Reading This New Discovery Could Improve Outcomes for Spina Bifida
Boy With Pelizaeus-Merzbacher Disease Swims With Dolphins
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Boy With Pelizaeus-Merzbacher Disease Swims With Dolphins

  • Post author:James Moore
  • Post published:January 2, 2018
  • Post category:Pelizaeus Merzbacher Disease/Rare Disease

Doctors told Shawn Rogers, who they had diagnosed with Pelizaeus-Merzbacher disease, that he might only have days to live. However, today he is swimming with dolphins, a dream that he…

Continue Reading Boy With Pelizaeus-Merzbacher Disease Swims With Dolphins
This Antidepressant Could Reduce Multiple Sclerosis Symptoms
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This Antidepressant Could Reduce Multiple Sclerosis Symptoms

  • Post author:James Moore
  • Post published:January 2, 2018
  • Post category:Multiple Sclerosis/Rare Disease

A new study suggests that the antidepressant medication clomipramine may function to relieve symptoms of multiple sclerosis. In this instance, the drug was tested to treat progressive multiple sclerosis, in…

Continue Reading This Antidepressant Could Reduce Multiple Sclerosis Symptoms
Parents Cope With Grief After Losing Child To Spinal Muscular Atrophy Through Photo Series
Source: Pixabay

Parents Cope With Grief After Losing Child To Spinal Muscular Atrophy Through Photo Series

  • Post author:Andres Rovira
  • Post published:January 2, 2018
  • Post category:Rare Disease/Spinal Muscular Atrophy

Skylar Marie came into the world as a beautiful healthy baby. It wasn't until 2 months later that her and her family's world would change forever. She was diagnosed with…

Continue Reading Parents Cope With Grief After Losing Child To Spinal Muscular Atrophy Through Photo Series
This Teenager Has Found Meaning In Her Rare Disease
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This Teenager Has Found Meaning In Her Rare Disease

  • Post author:Sarah Lau
  • Post published:January 2, 2018
  • Post category:Primary Immunodeficiency/Rare Disease

Olivia Ports recently performed for over a thousand people, including the Mayor and Governor of Chicago, helping to raise $3.75 million for research by Lurie Children’s Hospital in only one…

Continue Reading This Teenager Has Found Meaning In Her Rare Disease
11-Year-Old Receives Life Saving Kidney For Christmas
Source: Pixabay

11-Year-Old Receives Life Saving Kidney For Christmas

  • Post author:Meagan Fulps
  • Post published:January 2, 2018
  • Post category:Focal segmental glomerulosclerosis

It all started with a headache. 11-year-old Canyon Martin wasn't acting like himself and was sent home from school with a headache, reported Standard Times. A quick doctor visit after…

Continue Reading 11-Year-Old Receives Life Saving Kidney For Christmas

Featured


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Metastatic Breast Cancer: Navigating Grief


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Rethinking What It Means to Live With Acromegaly


Illustration of mentor program members


The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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