Skip to main content


Showing posts from June, 2013

UPDATE: Dr. Peter Tishler and APF Drug Database

Summer, 2013
Dear American Porphyria Foundation Member:
I hope you have been using the APF Drug Database (, which we established some years ago.  I am updating the drug database once again, to add new medications and reinforce or change the safety of existent medications.  Thus, I write once again to ask all APF members with an acute porphyria (intermittent acute porphyria, variegate porphyria, coproporphyria, ALA dehydratase deficiency porphyria) to provide information regarding your medications. 
Please complete the attached Evaluation of Medications form for each medication, Make a second copy if you have more medications to list.  Return it to the APF soon, using any of the mailing procedures listed below.  This will be very helpful.  I may contact you to clarify aspects of your report.
Many thanks.

Peter Tishler, MD
American Porphyria Foundation, 4900 Woodway, Suite 780, Houston Texas 77056-1837 e-mail: Fax:  713-840-9552

*Instructions to comp…

Living with a Disorder

Living with a Disorder by Victor A Mejias A friend asked me to help them understand my disorder and how I live with it. Please feel free to comment. I would like your input to see if this help people understand.
Imagine that you lived in a world with ONLY peanuts... All their was to eat was peanuts, you worked at a factory that processed peanuts, you grow peanuts at home to save money and there is no way to avoid peanuts 100% Now imagine your allergic to peanuts. Every time you smelled peanuts you broke into hives. Every time you touched peanuts it burned your skin like pouring hot wax on it. And God for bid you ate one.....(but remember peanuts are the only food source around) it would cause uncontrollable nerve vibrations, shivering, burning, itching, swelling, scaring, and pain that is so bad your brain wont let you body sleep. Where would you find the power to wake up every morning and go to work and provide for your family? Where does this strength come from knowing you will be in s…

What One Woman Can Do

Jennie Eberhardt Type of Porphyria:  Acute Intermittent Porphyria (AIP)
What One Woman Can DoAPF Sponsor, Jennie Eberhardt, has been awarded the 2006 APF Ambassador for the work she has done in her community. She is a one-woman porphyria awareness dynamo. Before her illness, Jennie enjoyed a successful career as a professional make-up artist with theaters and photographers. Her work took on other unusual aspects. For instance, she created mock victims to help train ambulance crews for disaster drills. She also did the make-up for cancer patients. One of her most gratifying experiences was to create a jaw line for a woman who had lost part of her jaw to throat cancer surgery. But her most enjoyable career experience was as the make-up artist for a production with female impersonators. In fact, Jennie developed such a great relationship with her clients that they are now some of her biggest supporters and encouragers since her illness.
Jennie’s career also encompassed beauty pageants an…

Ho well do you rank your sleep?

I believe that 7 hours of sound sleep are the perfect amount. Now for some of us 6 may be good, 8 may be better. I have listed below how I rank every hour of sleep. Read it over and tell me if you agree, disagree or have your own ideas for ranking every hour of sleep. Enjoy!

Hour 7: Perfect ammount

Hour 6: still a good amount but you wake feeling like you dont want to get out of bed.

Hour 5: You definately did not get enough sleep but give me my mocha java and i'll be fine.

Hour 4: I have to get up after 4 hours? Okay fine but I better have my own whole pot of coffee waiting for me!!!

Hour 3: Really? Are you serious? I better have a really good reason to be getting up after 3 hrs of sleep!

Hour 2: At 2 hours of sleep why does one even try to go to sleep? I mean all it is at this point is a cruel dirty trick. Good luck haveing day thats anything above mediocre!

Hour 1: You simply dont sleep. It's like when you lay down for a nap and yet cant fall asleep. Why did you even try&qu…

APF History

APF History The American Porphyria Foundation was formed in 1982 when Executive Director Desiree Lyon joined with another individual whose family was affected by porphyria to form a patient-run, expert-advised organization that would educate doctors and the general public about porphyria, raise funds for research, and advocate for better policy and patient care.
At the time, Desiree was a very sick young woman undergoing treatment as an inpatient at the National Institutes of Health in Bethesda, MD.  The physician-scientists treating her had explained that Acute Intermittent Porphyria was causing the horrible pain she felt, along with seizures and other neurological disturbances, immense swelling and rigidity of her abdomen, and other alarming and life-threatening symptoms.
As so many of us do when we are first diagnosed, Desiree sought more information about her condition, written in language she or any other person without a medical degree could understand.  She got permission from …

Are You Pooping Wrong?

Ok!  I know this not a subject anyone wants to talk about but it's a real thing that happens to us with Porphyria or not here are some suggestions I found that make going good.  Enjoy!

Are You Pooping Wrong? By worldwide standards, Americans are in the toilet on elimination practices. Our ancestors did it. People in Asia, Africa, and some parts of Europe still do it. So how did we Westerners end up deviating from the best way to go No. 2? Blame it on toilets as we know them. Thrones, they have been called. Turns out we should squat, not sit. In a 2003 study, 28 healthy people volunteered to time themselves doing their business in three alternate positions: sitting on a standard toilet, sitting on a low toilet, and squatting. They not only recorded how long it took them, but also how much effort it took. Squatting, the study concluded, takes less time and effort. "There is definitely some physiologic sense to squatting," says gastroenterologist Anish Sheth, MD, co-author …

Have you joined the APF In Touch Network

Join APF In Touch Because porphyria is a rare disease (defined as affecting fewer than 200,000 sufferers in the U.S.), many newly diagnosed patients have never even heard of the condition before, let alone met someone else who suffers from it. We created the APF In Touch network to meet this need.
APF membership includes access to the In Touch network, through which members can contact others around the country who are dealing with porphyria. Some members form lasting friendships via email, telephone or old-fashioned letters. Others prefer to reach out to members in their region and organize face-to-face get-togethers.
If you are seeking support and fellowship, or are willing to be there for others who are dealing with porphyria, please fill out and send in the In Touch consent form to our address below. For more information on the APF In Touch network, contact Mira at the APF office: 866-APF-3635 or 713-266-9617.
American Porphyria Foundation
4900 Woodway, Suite 780
Houston, TX 77056

Have you called yet?

Telemedicine ConsultationsIf you need to consult with a Porphyria specialist and are unable to do so because of the distance to a Porphyria center, you now have the opportunity to consult electronically. A Porphyria specialist and member of the APF Scientific Advisory Board, Dr. Karl Anderson, will be consulting with Porphyria patients via a telemedicine service from the General Clinical Research Center of the University of Texas Medical Branch at Galveston. To access this service, you need to first locate a video teleconferencing facility in your community. These facilities are often found in libraries, businesses, universities and research centers. Unfortunately, neither the APF nor Dr. Anderson can provide you with a list of facilities with teleconferencing capabilities. Next, call Dr. Karl Anderson (409) 772-4661 to arrange for an appointment and to find out what information you might need to have ready prior to the telemedicine visit. During the teleconference, Dr. Anderson will di…

Lots of Americans Want Health Care Via Smartphone

Lots of Americans Want Health Care Via Smartphone TUESDAY, June 18 (HealthDay News) -- Plenty of Americans are eager to use their mobile phones and tablet computers to better manage their health care, a new poll finds -- though the nation has a way to go before we're all consulting Dr. Smartphone. In a Harris Interactive/HealthDay survey released Tuesday, more than one-third of respondents who are online said they were "very" or "extremely" interested in using smartphones or tablets to ask their doctors questions, make appointments or get medical test results. Similar numbers of respondents were eager to use mobile phones and tablets for actual health-care services -- such as monitoring blood pressure or blood sugar, or even getting a diagnosis. Such phone and tablet apps are, however, either just getting off the ground or not yet on the market. The survey results show that the demand for digital assists to health care is "strong and likely to grow," said…

Running over obstacles to raise Awareness for Porphyria

Merideth McGinleyis a new APF member but is already a very active one.  Merideth says that the main goal of her fundraising event is to raise as much awareness for porphyria as possible.  Merideth says, "My last visit to the hospital really opened up my eyes to how little medical professionals really know about the disease.  If my fundraiser can help just one person has an easier experience with getting diagnosed then I will feel like I truly accomplished something."  She goes on to say,"When I was 19 years old, I was diagnosed with Acute Intermittent Porphyria.  Since being diagnosed in 2008, I have been in and out of the hospital and it has made me realize many people along with medical professionals do not know what Acute Intermittent Porphyria is or how to treat it". Read more of Merideths Bio...
"I have decided to run in the Warrior Dash onAugust 3rdin order to raise money and awareness about this disease. Read more about the Warrior Dash at http://warrior…

New Panhematin® brochure available for your physicians.

New Panhematin® brochure available for your physicians.
Panhematin® The APF has produced a new Panhematin® brochure.  If you would like a copy of the new brochure for your physician, please contact the APF and we will forward one to you promptly.  Remember, too, that the APF will send your doctor a free comprehensive doctor packet for the acute porphyrias. Call   1.866.APF.3635 or email .  If your physicians have questions about the administration or use of Panhematin, we will then send an instruction form or arrange a consultation with a porphyria expert if needed. For the many patients who are taking Panhematin®, please note that Recordati Rare Diseases, Inc. has purchased Panhematin® from Lundbeck Pharmaceutical.  Recordati Rare Diseases, Inc. has assured us that there should be no interruption in receiving the Panhematin® treatment and that the product is the same as it has always been.  In fact, for the next number of months, the telephone numbers and delivery s…

Kathyrn Nelson & PCT

Kathryn Nelson Type of Porphyria:  Porphyria Cutanea Tarda (PCT) My Porphyria Cutanea Tarda (PCT) experience began roughly seven years ago. At the time I was living in Irving, Texas. When lesions appeared on my face, forearms and legs, I thought that perhaps it was related to Psoriasis, an autoimmune disorder I had since I was a child. As a result, I resorted to a fairly common approach to Psoriasis which is exposure to UV rays. I spent an hour or so every afternoon in the sun, but more lesions developed and the existing ones grew in size. Repeated visits to my Dermatologist resulted in a variety of diagnoses including eczema, hives and finally a "picking" disorder which basically meant the doctor believes you are picking at your skin causing sores and infections. His primary reason for this was that the sores appeared only where I could physically reach the area, in other words, there were no lesions on my back or the backs of my legs. I pointed out that as a forty plus yea…

Be Prepared for Your Appointments

Visiting a Doctor is a commonplace experience, but seeing a physician in a Hospital, might produce white coat syndrome, higher anxiety event, therefore, be prepared for your appointment.

Prior to the visit, think about your specific symptoms and write down all relevant information.  Concentrate on what you want to know, your concerns etc. and create a questions list.  Ask others around you for suggestions if that is helpful.

When possible type your questions and print three copies: one for you, one for the doctor and one for the person who accompanies you.  When typing your list, consider leaving room after each question to fill in the answers.  The visit can nervousness and forgetfulness so the questions list is a very helpful tool.

If at all possible don't go alone.  Provide your companion with the list and ask him/her to take notes and listen.  Four ears are always better than two in processing important information. Discussions with a doctor about possible Porphyria are tough to …

Thinking of joining the Clinical Studies?

Clinical Studies There are two main types of clinical studies: clinical trials and observational studies.  In a clinical trial, there is some form of treatment intervention. There is no intervention in an observational study, which is aimed at observing patients to better understand the long-term course of their disease.
Clinical trials are used to test new treatments before they are approved for use by the FDA. This type of trial gives patients a chance to try out a new medication in its early stages. As with any experiment, the result of a trial is not known before its conclusion. Your participation could help demonstrate a terrific treatment breakthrough, or it could help scientists discover that a new treatment does not work after all. There may be some risk involved from the treatment in a clinical trial.

Participating in either a clinical trial or an observational study is a serious responsibility. Volunteering to participate could be a way to help yourself, affected family mem…

Go Green- Easing Brain Fatigue with a Walk in the Park

Easing Brain Fatigue with a Walk in the Park
Scientists have known for some time that the human brain’s ability to stay calm and focused is limited and can be overwhelmed by the constant noise and hectic, jangling demands of city living, sometimes resulting in a condition informally known as brain fatigue. With brain fatigue, you are easily distracted, forgetful and mentally flighty — or, in other words, me. But an innovative new study from Scotland suggests that you can ease brain fatigue simply by strolling through a leafy park. The idea that visiting green spaces like parks or tree-filled plazas lessens stress and improves concentration is not new. Researchers have long theorized that green spaces are calming, requiring less of our so-called directed mental attention than busy, urban streets do. Instead, natural settings invoke “soft fascination,” a beguiling term for quiet contemplation, during which directed attention is barely called upon and the brain can reset those overstretched …

Remember take the time: Few Wash Hands Properly, Study Finds

Few Wash Hands Properly, Study Finds
Did you wash your hands properly after you used the toilet? Probably not, a new study suggests. Researchers discreetly watched 3,749 people, 60 percent of them women, after they used public toilets in a Michigan college town. Over all, 10.3 percent did not wash their hands at all, and 22.8 percent used no soap. The remainder did use soap, but only 5.3 percent washed for longer than 15 seconds, soap or no soap. According to the Centers for Disease Control and Prevention, proper washing means rubbing vigorously with soap and water for at least 20 seconds. Men did worse than women — almost 15 percent of them did not wash at all, compared with 7.1 percent of women. People were more likely to wash their hands properly if there were motion-detection faucets, a clean sink or a sign encouraging the practice. The authors acknowledge that the presence of even discreet observers could have affected behavior, probably encouraging more hand washing. The study …

Young Children with EPP ask about Camp Discovery