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Daily Archives: December 11, 2020

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A Cape Coral Child is One of the Few People Worldwide Diagnosed with KAT6A Syndrome
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A Cape Coral Child is One of the Few People Worldwide Diagnosed with KAT6A Syndrome

  • Post author:Jessica Lynn
  • Post published:December 11, 2020
  • Post category:Rare Disease

When Camden Rau was born, his parents immediately knew that he was facing some sort of health problem. According to Camden's father, Steven, who spoke to Wink News, Camden's skull…

Continue Reading A Cape Coral Child is One of the Few People Worldwide Diagnosed with KAT6A Syndrome
5 Tips to Make it Through the Holiday Season with Chronic Illness

5 Tips to Make it Through the Holiday Season with Chronic Illness

  • Post author:Patient Worthy Contributor
  • Post published:December 11, 2020
  • Post category:Dysautonomia/Lyme Disease/POTS

I love the holidays. The lights, decorations, family time... even the smells are better! People generally seem to be jollier, even though there are a few obvious stresses that come…

Continue Reading 5 Tips to Make it Through the Holiday Season with Chronic Illness
Living with Spinal Muscular Atrophy: JR Trout’s Story
source: pixabay.com

Living with Spinal Muscular Atrophy: JR Trout’s Story

  • Post author:James Moore
  • Post published:December 11, 2020
  • Post category:Rare Disease/Spinal Muscular Atrophy

Ever since he was a young boy, JR Trout, who lives with spinal muscular atrophy (SMA), had a sense that there was something different about him. For years, he never…

Continue Reading Living with Spinal Muscular Atrophy: JR Trout’s Story
SUDEP Not as Rare as Once Believed, Could Cause 3% of Sudden Childhood Deaths
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SUDEP Not as Rare as Once Believed, Could Cause 3% of Sudden Childhood Deaths

  • Post author:Jessica Lynn
  • Post published:December 11, 2020
  • Post category:Status epilepticus

  Over the last decade, more information has been discovered about sudden unexpected death in epilepsy (SUDEP), although there is still much learning to be done. While researchers initially believed…

Continue Reading SUDEP Not as Rare as Once Believed, Could Cause 3% of Sudden Childhood Deaths
Study Evaluates Chronic Kidney Disease Impacts in the European Elderly
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Study Evaluates Chronic Kidney Disease Impacts in the European Elderly

  • Post author:James Moore
  • Post published:December 11, 2020
  • Post category:Chronic Kidney Disease

According to a story from blogs.biomedcentral.com, a research project called SCOPE H2020 focused on the impacts of chronic kidney disease screening of the elderly in the EU. The research included…

Continue Reading Study Evaluates Chronic Kidney Disease Impacts in the European Elderly
This Dravet Syndrome Patient’s Family are Raising Funds for a Life-Changing Gift
source: pixabay.com

This Dravet Syndrome Patient’s Family are Raising Funds for a Life-Changing Gift

  • Post author:James Moore
  • Post published:December 11, 2020
  • Post category:Dravet Syndrome

According to a story from spectrumnews1.com, three year old Israel Bombela has endured many health challenges in his short life so far. The youngster went through a bout of COVID-19…

Continue Reading This Dravet Syndrome Patient’s Family are Raising Funds for a Life-Changing Gift
Experimental Antibody Drug Conjugate Shows Promise in BPDCN
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Experimental Antibody Drug Conjugate Shows Promise in BPDCN

  • Post author:James Moore
  • Post published:December 11, 2020
  • Post category:Blastic plasmacytoid dendritic cell neoplasm

According to a story from Newswise, the early results of a recent phase 1/2 clinical trial have revealed the potential of an experimental treatment that was being tested for blastic…

Continue Reading Experimental Antibody Drug Conjugate Shows Promise in BPDCN
How to Get Through the Holidays When You’re Depressed
Source: Pexels.com

How to Get Through the Holidays When You’re Depressed

  • Post author:Erica Zahn
  • Post published:December 11, 2020
  • Post category:Dysautonomia

For those of us who suffer from depression, that mostly invisible mental illness that, at its worst, can render us incapable of getting out of bed and, at its best,…

Continue Reading How to Get Through the Holidays When You’re Depressed
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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