Month: December 2021

December 31, 2021December 31, 2021

Specialty Care Can Lower Need for Hospitalization With PH-HFpEF

Care at a specialty center is tied to a lower risk of hospitalization for people with heart failure with preserved ejection fraction (HFpEF) who have pulmonary hypertension, according to a new study. ... Read more

December 31, 2021December 31, 2021

Adults With SMA Type 2 Have Lower IQ Scores in Specific Areas

SMA News Today

Adults with spinal muscular atrophy (SMA) type 2 have lower intelligence quotient (IQ) scores on assessments for working memory and perceptual reasoning compared with the general population, according to data ... Read more

December 31, 2021December 31, 2021

How PINK1 Activates to Affect Neurons Captured for First Time

Parkinson's News Today

In a “world-first,” scientists in Australia report in detail what happens to the PINK1 protein when it is activated, helping to clear the “confusion” that has surrounded this support protein ... Read more

December 31, 2021December 31, 2021

Cognition-targeted Exercise May Boost CBT’s Easing of Fatigue

Multiple Sclerosis News Today

Cognition-targeting exercise, when combined with cognitive behavioral therapy (CBT) — a type of talk therapy — may further ease fatigue and other symptoms in people with multiple sclerosis (MS), a study ... Read more

December 30, 2021December 30, 2021

Year’s End Brings a Little Bird and Memories

SMA News Today Columns

Our baby Jeffrey snagged his wings in early November 1997, ending the brief active-duty portion of our SMA assignment. A few short months later, my husband, Randy, and I opened ... Read more

December 30, 2021December 30, 2021

Prepare to Light Up Buildings for Rare Disease Day 2022

COVID-19 News, Scleroderma News

The National Organization for Rare Disorders (NORD) asks Americans to plan ahead to participate in the Light Up for Rare campaign to raise awareness of rare diseases. NORD is the ... Read more

December 30, 2021December 30, 2021

Instead of Resolutions, a Promise of Transformation in the New Year

Hemophilia News Today Columns

I start every year by promising to make meaningful changes in my life. I hope to lose weight, exercise more, live a healthier life, and be a better parent to ... Read more

December 30, 2021December 30, 2021

How Chronic Illness Affected My Education

COVID-19 Columns, Cystic Fibrosis News Today Columns

In a previous column, I explained that I was diagnosed with mycobacterium abscessus — one of the deadliest infections for cystic fibrosis (CF) patients — in my junior year of ... Read more

December 30, 2021December 30, 2021

Entering 2022 With a Fresh Perspective on Friedreich’s Ataxia

Friedreich’s Ataxia News Columns

Those who have been following my column about my journey through life with Friedreich’s ataxia (FA) have probably noticed that I try to bring every entry to a positive conclusion. ... Read more

December 30, 2021December 30, 2021

A Resolution to Keep Celebrating the Small Things

COVID-19 Columns, Pulmonary Hypertension News Columns

I was hospitalized following my heart-lung transplant in 2018 One of the biggest emotional burdens was experiencing the passage of time, which was most notably marked by the holidays. Halloween ... Read more

December 30, 2021December 30, 2021

The Top 4 Words I Use to Describe IPF

COVID-19 Columns, Pulmonary Fibrosis News Columns

I have tried countless times to describe idiopathic pulmonary fibrosis (IPF). In 2019, I tried to explain what it physically feels like, but I still can’t find words that adequately ... Read more

December 30, 2021December 30, 2021

Making Game Nights Work

ALS News Today Columns

It feels like a win when we can figure out how to include my husband, Todd, in game nights. He is paralyzed because of amyotrophic lateral sclerosis (ALS), so any ... Read more

December 30, 2021December 30, 2021

The Devil on My Angel’s Shoulder

Angelman Syndrome News Columns

Although they present a happy demeanor, Angels can have bad days. Or bad weeks, which is what happens when my 11-year-old Angel, Juliana, is sick. Her sweet disposition is there ... Read more

December 30, 2021December 30, 2021

The Blessings That Spark My Ambitions for the New Year

SMA News Today Columns

I’ve recently learned about two kinds of achievements in life. One is when you’re up a creek in a bad situation, but miraculously, things seem to resolve on their own. ... Read more

December 30, 2021December 30, 2021

Prepare to Light Up Buildings for Rare Disease Day 2022

COVID-19 News, Sickle Cell Disease News

The National Organization for Rare Disorders (NORD) asks Americans to plan ahead to participate in the Light Up for Rare campaign to raise awareness of rare diseases. NORD is the ... Read more