Skip to main content

Tom Collier A Long Road to Diagnosis EPP

Tom Collier: A Long Road to Diagnosis EPP Conference Call 

 For EPP patients it would be wonderful to be able to withstand and even enjoy more time in the outdoors, and to gain potential benefits for liver health. Being able to better avoid flare-ups from EPP is an important treatment goal, as Dr. Bloomer and Dr. Roth both noted that the main treatments available for the pain of EPP symptoms are aspirin, Tylenol (acetaminophen) and cold compresses. Dr. Bloomer encouraged everyone interested in the trials to stay in touch with the APF—we will let you know as soon as we have concrete information about afamelanotide trials. Almost all of the call participants wanted to know if they will be able to participate in afamelanotide trials and when the trials will start. Here we summarize some of the remaining issues addressed during the call—a full account is on our website.

 • Liver disease. Dr. Bloomer stressed that very few people with EPP will develop liver disease, and that the best way to prevent liver disease is through vigilance and prevention: protect your skin carefully and have your doctor check your protoporphyrin levels at least once a year. 

• Surgical lights. Dr. Bloomer said it is absolutely necessary to cover surgical lights with UV protective films in EPP liver transplant surgery to prevent burns to the skin and internal organs. It is good caution to use the same films in other surgeries on EPP patients as well. 

• Drug safety in EPP. Both doctors stressed that EPP patients should avoid drugs, like estrogens, that are known to block the flow of bile. But Dr. Bloomer cautioned against confusing the medication issues in EPP with those in the acute porphyrias—the drug precautions for acute porphyrias do not apply in EPP. • Donating blood, organs and bone marrow. EPP patients should absolutely not donate bone marrow, to avoid giving EPP to the marrow recipient. Donating whole blood and organs other than the liver should be safe. 

• Current recommendations for the annual blood tests for EPP patients are on our website at www.porphyriafoundation. com/about-porphyria/types-of-porphyria/EPP ~ Dr. Roth’s recommendations for an EPP medic alert bracelet: www. ~ For UVF protection, Dr. Roth recommended Llumar auto glass film: ~ COTZ Total Block (with Titanium Dioxide and Zinc Oxide), available from ~ and others, as sunblock; and mentioned the Solumbra line of clothing from 65077 XT , not suo H, 087 eti uS, ya wdoo W0094 det seuqer eci vr es sser ddA The information contained on the American Porphyria Foundation (APF) Web site or in the APF newsletter is provided for your general information only. The APF does not give medical advice or engage in the practice of medicine. The APF under no circumstances recommends particular treatments for specific individuals, and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment. All information and content on this Web site are protected by copyright. All rights are reserved. Users are prohibited from modifying, copying, distributing, transmitting, displaying, publishing, selling, licensing, creating derivative works, or using any information available on or through the site for commercial or public purposes. 


Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!


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…


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…