Month: January 2022

January 31, 2022January 31, 2022

My Husband Is Strong Because of Hemophilia

A sealed jar that no one can open. A faucet attachment that’s been screwed on too tightly. A piece of furniture that needs to be moved. These are just some ... Read more

January 31, 2022January 31, 2022

Faced With Alzheimer’s Disease, We’re Buoyed by Grace

Alzheimer’s News Today Columns

Last Wednesday would have been my mother’s 94th birthday. While she wasn’t famous, she was an exceptional person before Alzheimer’s disease claimed her life, and she is the inspiration for ... Read more

January 31, 2022February 1, 2022

Antiviral Favipiravir Triggers Angioedema in Case Study of 2 Women

Angioedema News, COVID-19 News

Favipiravir, an antiviral medication used to treat influenza and, more recently, COVID-19, may trigger angioedema in some individuals, a case study says. The report was published as a clinical commentary, ... Read more

January 31, 2022February 1, 2022

Promising Compound Derived From Tick Saliva May Help Stop Flare-ups

COPD News Today

Animal and human studies highlight the potential of nomacopan, an investigational inhaled medicine to alleviate severe exacerbations caused by inflammatory lung diseases, such as chronic obstructive pulmonary disease (COPD). Akari ... Read more

January 31, 2022February 1, 2022

Early Treatment Linked to Less Joint Damage in Severe Hemophilia A

Hemophilia News Today

In boys and men with severe hemophilia A, joint damage accumulates with age, and can be prevented if replacement therapy is started at a younger age, according to a small, ... Read more

January 31, 2022January 31, 2022

Study Encourages Genetic Testing for Pregnant Women Who May Have EDS

Ehlers-Danlos News

A study recommends genetic testing if a pregnant woman is suspected of having Ehlers-Danlos syndrome (EDS), especially vascular EDS because this disease type carries an increased risk of uterine rupture ... Read more

January 31, 2022January 31, 2022

Eplontersen Granted Orphan Drug Status in US for ATTR Amyloidosis

FAP News Today

The U.S. Food and Drug Administration (FDA) granted orphan drug status to eplontersen, an investigational therapy that seeks to prevent the buildup of toxic protein deposits in people with transthyretin (ATTR) ... Read more

January 31, 2022January 31, 2022

Funding Boost From MJFF Advances Lysosome-targeting Therapies

Parkinson's News Today

Caraway Therapeutics was awarded a new research grant from the Michael J. Fox Foundation (MJFF) to further work on therapies that increase flux, or movement, into the lysosome, a tiny ... Read more

January 31, 2022January 31, 2022

Treating Our Daughter’s COVID-19 With Sotrovimab

COVID-19 Columns, Lambert-Eaton News Columns

Given the most recent COVID-19 surge, it seems that many people are resigned to getting sick with the new coronavirus variant, omicron. I pushed hard against this idea because our ... Read more

January 31, 2022January 31, 2022

Sometimes Love Means Letting Go

Huntington’s Disease News Columns

Two weekends ago, my wife, Jill, and I said goodbye to our daughter, Alexus, son-in-law, René, and their cats as they headed back home to Boston. Because remote work is ... Read more

January 31, 2022January 31, 2022

How to Benefit by Playing Devil’s Advocate in the Fight Against PH

Pulmonary Hypertension News Columns

Living with the physical health challenges that pulmonary hypertension (PH) places on a patient is hard enough, but the disease can also wreak havoc on mental wellness. There really is ... Read more

January 31, 2022January 31, 2022

The Enemy Is Urgency

COVID-19 Columns, SMA News Today Columns

In 2019, something wonderful happened. I got bit by the tattoo bug. If you’ve followed my column for a while, you’ll know my first tattoo was a big deal. First, ... Read more

January 31, 2022January 31, 2022

Why I Started Advocating for Blood Donations

Sickle Cell Disease News Columns

As someone with sickle cell disease, I’m very passionate about blood donations because this selfless act of kindness can change a person’s life, or even save it. Many donations go ... Read more

January 31, 2022January 31, 2022

Learning Which Numbers Really Matter

COVID-19 Columns, Sarcoidosis News Columns

It’s easy to forget what’s most important when living with a chronic health condition. I reflect on this often, especially when I’m working out at the gym or trying to ... Read more

January 31, 2022January 31, 2022

Accepting Help and Receiving Kindness

COVID-19 Columns, Myasthenia Gravis News Columns

I wrote last week about how the inaction and silence of others can be deafening. The opposite is also true. When help is offered and the offer is followed up ... Read more