Month: January 2021

January 15, 2021January 15, 2021

My ‘Great Escape’ During a Long Pandemic

COVID-19 Columns, Multiple Sclerosis News Today Columns

Unfortunately, mine didn’t involve a cool motorbike — it was the wrong kind, as somehow Steve McQueen had managed to steal a British one — and an impossible jump at ... Read more

January 15, 2021January 15, 2021

Advice From a Life Coach: Resolutions, Mindsets, and Emotions

SMA News Today Columns

Last summer, I met a new friend, Amber Bosselman, at the Virtual Cure SMA Conference. Amber is a certified life coach with a bachelor’s degree in psychology. She uses her ... Read more

January 15, 2021January 15, 2021

UK Rare Diseases Framework Opens to Improve Diagnosis, Access to Care

Scleroderma News

U.K. Rare Diseases Framework, a government-led approach to raising national awareness of rare disorders, accelerating  diagnoses, and improving patient care and treatment, is now in practice. This  framework, signed by ... Read more

January 15, 2021January 15, 2021

Low Frequency of Certain Immune Cells May Help Identify MG

Myasthenia Gravis News

Lower frequency of a specific subset of immune cells in the bloodstream may help identify myasthenia gravis (MG) in cases difficult to diagnose, specifically those testing negative for MG autoantibodies, ... Read more

January 15, 2021January 15, 2021

COVID-19 May Be Severe in Cushing’s Patients, Case Report Suggests

COVID-19 News, Cushing's Disease News

A young healthcare worker who contracted COVID-19 shortly after being diagnosed with Cushing’s disease was detailed in a case report from Japan. While the woman was successfully treated for both ... Read more

January 15, 2021January 15, 2021

National Fragile X Foundation Leading Patient-Focused Drug Development Meeting

Fragile X News Today

The National Fragile X Foundation (NFXF) will host a virtual patient-focused drug development (PFDD) meeting for fragile X syndrome on March 3. To be held from 10 a.m. to 2 p.m. ... Read more

January 15, 2021January 15, 2021

Hemin Pretreatment Helped Treat Bacterial Infection in AIP Patient

Porphyria News

Pretreatment with hemin helped treat a bacterial Helicobacter pylori (H. pylori) infection in a woman with acute intermittent porphyria (AIP), a Japanese case study reports. The treatment protocol outlined in the report was ... Read more

January 15, 2021January 15, 2021

Chronic Fungal Infection May Be Common in Non-CF Bronchiectasis

Bronchiectasis News Today

Chronic infection by the fungus Aspergillus fumigatus occurs frequently among people with non-cystic fibrosis (CF) bronchiectasis and warrants routine monitoring, a study suggests. The study, “Sensitization to A.fumigatus in subjects with ... Read more

January 15, 2021January 15, 2021

Oxervate Effective at Managing Hard-to-treat NK, Case Study Reports

Neurotrophic Keratitis News

Adding Oxervate (cenegermin) eye drops to conventional treatment approaches may successfully manage hard-to-treat neurotrophic keratitis (NK) associated with eye surgery and persistent infections, a case study suggests. This case adds ... Read more

January 15, 2021January 15, 2021

New Year, Same Old COVID-19 Fears

COVID-19 Columns, Pulmonary Fibrosis News Columns

For me, the scariest part of the pandemic has been imagining one of my loved ones developing a severe case of COVID-19. Relatable statement, I know. But I don’t have ... Read more

January 15, 2021January 15, 2021

What I’ve Learned From Sharing Stories About My Life With SMA

SMA News Today Columns

January marks the eighth anniversary of when my blog came to life. I was never much of a writer prior to launching my blog. In fact, when I announced that ... Read more

January 15, 2021January 15, 2021

What I Wish I’d Known About Laparoscopies

Endometriosis News Columns

Life with endometriosis involves at least one laparoscopy. Because adhesions can appear deep in the body, or hidden behind other organs, they often go undetected by imaging tests. This is ... Read more

January 15, 2021January 15, 2021

As Abby’s Illness Progresses, My Coping Mechanisms Change

Sanfilippo News Columns

Many parents will agree that our child’s diagnosis with a terminal illness was the worst news we could ever receive. I have been living this reality now for a little ... Read more

January 15, 2021January 15, 2021

How a Blood Donor Saved My Life

Cystic Fibrosis News Today Columns

Hearing the words “blood transfusion” still sends chills down my spine. The emotional response my entire body felt when I heard those words for the first time from a doctor ... Read more

January 15, 2021January 15, 2021

Girls With Rett Have Higher Rate of Menstrual Seizures, Study Says

Rett Syndrome News

Girls and women with Rett syndrome may have increased rate of menstrual seizures, also known as catamenial seizures, compared to healthy females, a study reports. Age of onset, and duration ... Read more