Skip to main content


Showing posts from November, 2018


GET INVOLVED WITH APFBecome a member of the American Porphyria Foundation today, and join us in our work for your good health! When you join the APF, you become an integral part of an organization that empowers patients and helps them on the road to accurate diagnosis, proper care, and some day a cure. Adding your voice to ours makes us all stronger as we address our needs to health care providers, local, state and federal agencies and Congress. If you feel you have porphyria but do not have tests indicating you have one of the diseases, you are welcome to join the APF to keep abreast of new discoveries in diagnostics and treatment. Members of the American Porphyria Foundation receive: Our quarterly newsletter — news about porphyria research and clinical studies, scientific meetings and member get-togethers, and stories about the doctors working in the porphyria field and about members like you;Attend APF Patient Educational meetings with Experts Nationwide;Receive weekly E-News in you…


THE GLUCOSE EFFECT IN ACUTE PORPHYRIASThe disorders Acute Intermittent Porphyria (AIP), Hereditary Coproporphyria (HCP), Variegate Porphyria (VP) and ALAD Porphyria (ADP) are treated initially with the administration of carbohydrate/glucose. This therapy has its basis in the ability of glucose to decrease porphyrin biosynthesis in the liver. Glucose can diminish excess excretion of heme precursors, which, in turn, can prevent an attack or can hasten recovery from an attack of the acute porphyrias. Therefore, it is suggested that when patients cannot consume carbohydrates due to nausea or vomiting, glucose should be administered intravenously. Some physicians have prepared a standing order for patients who are prone to attacks to help facilitate intravenous glucose in the emergency room. Often this prevents further hospitalization. Most patients are knowledgeable about the deleterious affect the wrong drug can have on their bodies and are consequently careful about the medication they …

Support Giving Tuesday

Please support the American Porphyria Foundation today! #GivingTuesdayis a global day of giving focused on organizations that have an impact on something you care about. The APF cares about making each day better for individuals and families living with Porphyria.  Every dollar counts as we work to educate physicians, raise awareness and promote research!!  This year Facebook and PayPal are partnering together to match up to a total of $7 million in donations to US nonprofits on #GivingTuesday!  We appreciate all that our members do each day to help us reach our goals - thank you for considering a donation today. Like, Tag and Share! Click the link below to donate!


GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: (Porphyria Association Denmark)Denmark: (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…


What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…

Porphyria Post

Porphyria Post
Happy Thanksgiving!
APF Office Closure We would like to wish you all a very Happy Thanksgiving! For those of you traveling this Holiday, please have a safe and fun trip.
The American Porphyria Foundation will be closed on Thursday, November 22, 2018 and reopen for normal business hours on Monday, November 26, 2018. Please see below for some additional announcements from the APF.
Harvoni Study - PCT Do you have PCT? Are you interested in participating in research? Do you have Hepatitis C? If you answered YES to these questions, this is for you.
We need YOU for a clinical trial!
The purpose of this clinical trial is to assess whether Harvoni alone is an effective therapy in active PCT patients with Chronic Hepatitis C.
Who can participate?
• Adult patients with PCT who also have Hepatitis C
If you are interested in participating please contact Edrin Williams, Director of Patient Services at the APF office at 301.34

Michelle Bridges AIP

I spent my whole life with unexplained symptoms. Sometimes my legs would give out, and I would have back pain, abdominal pain, slurred speech, difficulties walking and so forth. When I was 16, doctors found a mass in my brain. After removing what they could, all my health problems were blamed on “post surgical changes.” In 2005, the doctors began to wonder about other causes. I was sent to see a Gastroenteritis and diagnosed with pancreatitis. But there was no explanation for my abdominal pains that would come out of nowhere and then disappear. The doctors decided that is was due to a problem with my digestion and cut part of my bile duct. However, I landed back in the hospital with pancreatitis. Then nothing happened for about eight months.   At the end of July 2006, I began to have problems again. They put me on Reglan with the intention of running more tests and after about a week, I woke up feeling bizarre. I was in a haze and unable to function. I had called a friend and asked her …

Porphyria Post

Porphyria Post

Last Day to Vote!
Tomorrow is the last day to capture votes for your furry friends! We look forward to sharing the results with our community.
If you haven't already done so, please go to the APF website to see everyone's submissions!
Make sure that you see your share this link and your individual voting pages with your family and friends.
The final 12-month wall calendar will feature your wonderful animals, porphyria facts, tips, and important dates. Voting for the top slots will be held online and will benefit our critical Protect the Future program.
Link: 2019 Pet Calendar Contest Submissions
Here’s how it works:

To Vote: