American Porphyria Foundation Purple Light Blog

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…

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.
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 porphyrus@aol.com .  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…

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…

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 …

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…

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 …

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 …