November 17, 2020November 18, 2020
COVID-19 Canceled My Wedding, and That’s OK
"One Thousand Flaming Swords" – a Column by Claire Richmond, Columns
The COVID-19 pandemic canceled a wedding we had scheduled for last June. When my fiancé, Michael, and I told ... Read more
November 13, 2020November 13, 2020
Rare Case of AIP Plus Seizures Highlights Importance of Proper Diagnosis
News
A rare case of a woman with acute intermittent porphyria (AIP) complicated by posterior reversible encephalopathy syndrome (PRES), a ... Read more
November 10, 2020November 6, 2020
Learning Life Lessons From My Dog
"One Thousand Flaming Swords" – a Column by Claire Richmond, Columns
It was love at first sight when I met my standard poodle, Lenny Bruce, but what I never imagined ... Read more
November 10, 2020November 10, 2020
Genetic Testing for Porphyria
Health Insights
Genetic testing can be used by clinicians to look for changes in your DNA that could cause a genetic ... Read more
November 6, 2020November 6, 2020
Case Report Describes Man With Two Distinct Porphyria-causing Mutations
News
An Argentinian man with two different porphyria-causing mutations was described in a new case report. The unusual findings highlight ... Read more
November 5, 2020November 6, 2020
NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits
News, syndicated
The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in ... Read more
November 3, 2020October 30, 2020
Caring for the Caregiver: When Roles Are Reversed
"One Thousand Flaming Swords" – a Column by Claire Richmond, Columns
My fiancé, Michael, is my caregiver. He tends to my needs during acute hepatic porphyria attacks, provides emotional support, ... Read more
November 3, 2020November 3, 2020
What Tests Can Help Diagnose Porphyria?
Health Insights
Doctors can use various diagnostic tests to determine whether a patient’s symptoms are caused by porphyria or another disorder. ... Read more
October 30, 2020October 30, 2020
AIP Patients Show Enlarged Brain Cavities, Reduced Brain Blood Flow, Study Suggests
News
People with acute intermittent porphyria (AIP) have structural changes in the brain, namely an enlargement of the brain’s ventricles ... Read more
October 27, 2020
Porphyria in Children
Health Insights
While most cases of porphyria manifest later in life, the disease sometimes affects infants and children. Following is information ... Read more
October 27, 2020October 23, 2020
Eating Halloween Candy Is Good for My Health
"One Thousand Flaming Swords" – a Column by Claire Richmond, Columns
I recently found myself (masked up) at Walmart in a tiny Iowa town. These days, I don’t frequent big-box ... Read more
October 26, 2020October 28, 2020
UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner
News, syndicated
A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will ... Read more

November 17, 2020November 18, 2020

COVID-19 Canceled My Wedding, and That’s OK

"One Thousand Flaming Swords" – a Column by Claire Richmond, Columns

The COVID-19 pandemic canceled a wedding we had scheduled for last June. When my fiancé, Michael, and I told friends and family abut our decision to postpone the ceremony, ... Read more

November 13, 2020November 13, 2020

Rare Case of AIP Plus Seizures Highlights Importance of Proper Diagnosis

News

A rare case of a woman with acute intermittent porphyria (AIP) complicated by posterior reversible encephalopathy syndrome (PRES), a neurological disorder characterized by seizures, was described in a report. ... Read more

November 10, 2020November 6, 2020

Learning Life Lessons From My Dog

"One Thousand Flaming Swords" – a Column by Claire Richmond, Columns

It was love at first sight when I met my standard poodle, Lenny Bruce, but what I never imagined is how much he’d teach me about love and living. ... Read more

November 10, 2020November 10, 2020

Genetic Testing for Porphyria

Health Insights

Genetic testing can be used by clinicians to look for changes in your DNA that could cause a genetic disorder such as porphyria. Genetics of porphyria Porphyria is a ... Read more

November 6, 2020November 6, 2020

Case Report Describes Man With Two Distinct Porphyria-causing Mutations

News

An Argentinian man with two different porphyria-causing mutations was described in a new case report. The unusual findings highlight the importance of thorough clinical and molecular analyses in such ... Read more

November 5, 2020November 6, 2020

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

News, syndicated

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit ... Read more

November 3, 2020October 30, 2020

Caring for the Caregiver: When Roles Are Reversed

"One Thousand Flaming Swords" – a Column by Claire Richmond, Columns

My fiancé, Michael, is my caregiver. He tends to my needs during acute hepatic porphyria attacks, provides emotional support, and has steady energy that keeps me sane. Last year ... Read more

November 3, 2020November 3, 2020

What Tests Can Help Diagnose Porphyria?

Health Insights

Doctors can use various diagnostic tests to determine whether a patient’s symptoms are caused by porphyria or another disorder. Here is some information about the most common tests and ... Read more

October 30, 2020October 30, 2020

AIP Patients Show Enlarged Brain Cavities, Reduced Brain Blood Flow, Study Suggests

News

People with acute intermittent porphyria (AIP) have structural changes in the brain, namely an enlargement of the brain’s ventricles — a set of four communicating cavities — associated with ... Read more

October 27, 2020

Porphyria in Children

Health Insights

While most cases of porphyria manifest later in life, the disease sometimes affects infants and children. Following is information about the types of porphyria in children, how doctors diagnose ... Read more