January 22, 2021January 22, 2021
Cancer Radiation Therapy Resolves PCT, Case Study Reports
News
Radiation therapy for a woman with vaginal cancer completely resolved co-existing porphyria cutanea tarda (PCT), a form of porphyria ... Read more
January 20, 2021January 20, 2021
NORD’s Caregiver Respite Program Continues Through Pandemic
News, syndicated
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, ... Read more
January 20, 2021January 20, 2021
FAQs About Liver Transplant for Porphyria
FAQs
Porphyria is a family of metabolic disorders largely caused by mutations in the genes that regulate the body’s production ... Read more
January 19, 2021January 15, 2021
After Years of Pain, I’m Finally Receiving Treatment for Chronic Migraines
"One Thousand Flaming Swords" – a Column by Claire Richmond, Columns
I would rather put on a strong face than admit to anyone the sheer amount of pain I’m enduring. ... Read more
January 15, 2021January 15, 2021
Hemin Pretreatment Helped Treat Bacterial Infection in AIP Patient
News
Pretreatment with hemin helped treat a bacterial Helicobacter pylori (H. pylori) infection in a woman with acute intermittent porphyria (AIP), a Japanese ... Read more
January 12, 2021January 7, 2021
Why People With Acute Porphyria Should See a Cardiologist
"One Thousand Flaming Swords" – a Column by Claire Richmond, Columns
Last month, my primary care physician (PCP) referred me to a cardiologist for suspected postural orthostatic tachycardia syndrome (POTS) ... Read more
January 12, 2021January 12, 2021
Porphyria and Your Liver
Health Insights
People with certain types of porphyria may have problems with their liver. The following information may help you understand ... Read more
January 11, 2021January 11, 2021
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum
News, syndicated
The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to ... Read more
January 8, 2021January 8, 2021
Nerve, Kidney Damage Found to Predict AIP Liver Transplant Outcomes
News
A liver transplant is effective and is associated with high survival rates in people with acute intermittent porphyria (AIP), ... Read more
January 5, 2021January 5, 2021
Sleep Hygiene for Porphyria Patients
Health Insights
People with porphyria often have trouble sleeping. Because a good night’s sleep is vital to physical and mental health, as ... Read more
December 22, 2020December 18, 2020
Making New Year’s Resolutions While Chronically Ill
"One Thousand Flaming Swords" – a Column by Claire Richmond, Columns
It’s that time of year again, when many of my friends and those on social media are making vision ... Read more
December 22, 2020December 22, 2020
Mindfulness for People With Porphyria
Health Insights
The symptoms of chronic diseases such as porphyria can present real challenges in your everyday life. One way to ... Read more

January 22, 2021January 22, 2021

Cancer Radiation Therapy Resolves PCT, Case Study Reports

News

Radiation therapy for a woman with vaginal cancer completely resolved co-existing porphyria cutanea tarda (PCT), a form of porphyria that affects the skin, a case study reported. The case ... Read more

January 20, 2021January 20, 2021

NORD’s Caregiver Respite Program Continues Through Pandemic

News, syndicated

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization ... Read more

January 20, 2021January 20, 2021

FAQs About Liver Transplant for Porphyria

FAQs

Porphyria is a family of metabolic disorders largely caused by mutations in the genes that regulate the body’s production of a molecule called heme. Your cells are unable to ... Read more

January 19, 2021January 15, 2021

After Years of Pain, I’m Finally Receiving Treatment for Chronic Migraines

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

I would rather put on a strong face than admit to anyone the sheer amount of pain I’m enduring. I’m less focused on describing the actual pain at doctors’ ... Read more

January 15, 2021January 15, 2021

Hemin Pretreatment Helped Treat Bacterial Infection in AIP Patient

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 ... Read more

January 12, 2021January 7, 2021

Why People With Acute Porphyria Should See a Cardiologist

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

Last month, my primary care physician (PCP) referred me to a cardiologist for suspected postural orthostatic tachycardia syndrome (POTS) after I blacked out (again) on the massage table. According ... Read more

January 12, 2021January 12, 2021

Porphyria and Your Liver

Health Insights

People with certain types of porphyria may have problems with their liver. The following information may help you understand the link between porphyria and liver damage, the problems the ... Read more

January 11, 2021January 11, 2021

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

News, syndicated

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD ... Read more

January 8, 2021January 8, 2021

Nerve, Kidney Damage Found to Predict AIP Liver Transplant Outcomes

News

A liver transplant is effective and is associated with high survival rates in people with acute intermittent porphyria (AIP), a study reports. However, severe neuropathy, or nerve damage, and ... Read more

January 5, 2021January 5, 2021

Sleep Hygiene for Porphyria Patients

Health Insights

People with porphyria often have trouble sleeping. Because a good night’s sleep is vital to physical and mental health, as well as your quality of life, you may benefit from ... Read more