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Showing posts from November, 2014

Finding a Doctor

Finding a DoctorThe American Porphyria Foundation promotes comprehensive care necessary for treating individuals with Porphyria.  This section of our website offers suggestions for finding a local doctor who can manage your Porphyria, options for having your doctor consult a Porphyria specialist, and information on arranging a visit to a Porphyria clinic. Because Porphyria is so rare, few physicians have experience treating patients with the disease.  Most patients are in fact treated But the APF can help by putting your doctor's office in touch with a Porphyria specialist who can offer guidance on your care. For those who need a diagnosis, you may be able to obtain a consultation at Porphyria clinic. Call the APF to reach a porphyria expert at a porphyria center.  The APF office will also guide you to doctors who are not experts but are knowledgeable about porphyria. You may be asked to send your blood, urine, and stool samples for evaluation in advance of a clinic appointment.  E…

Reminders for all Porphyria Members

Just a reminder about our upcoming patient educational meeting in San Francisco. It will be held at Hyatt Regency Five Embarcadero Center on December 7, from 4 pm to 6 pm. You will have an unique opportunity to meet with porphyria experts Dr. Bissell and Dr. Wang and meet with fellow patients. Everyone is welcome to participate.

Please stay safe & sound this winter.  Most of the United States is covered in Storms.  Remember if you become in any emergency please contact 911 and your local authorities.  You may also want to keep a list of current medications, allergies and medical conditions that you may have handy and tell friends or family to bring this along.

If you would like to receive a patient packet or a comprehensive Dr Kit from the APF please give them a call.  Please have your name address for you and your medical care team available so that they can send it out to you.  1-866-APF-3635.

Happy Winter days to you all.

"Remember.....Research is the key to your cure!"

Tips for the doctor's office

Tips for the doctor's officeMake Lists
You may not always need to share all of your information with every doctor you see but the following items are particularly important:
A list of all of your medications and needed refills, a summary of your medical history, a list of your recent tests, a list of your questions, concerns and new information, forms your doctor needs to address,
Plan Ahead For Your Doctor Visit
Prepare your questions and a list of your symptoms,  ( For example, racing heart, blisters, etc) Be concise. When you schedule your appointment, ask if you should have test results or other medical records sent to the doctor’s office before your visit. Nothing is worse than rescheduling for new tests you could have taken earlier or not had with you.
At Your Visit
Be on time.  Give and expect respect. Bring your lists and tell the doctor what you want to discuss and your goals for the visit. Be as brief as possible.  Communication is an especially important skill.  Make every wo…

Caretaker Support Forum

Caretaker Support ForumNew APF Caretaker Support Forum

Warren Hudson, who serves on the APF Board of Directors, has agreed to head our Caretaker Support Forum for spouses or partners who help their loved one cope with porphyria. To read more about Warrens story as a caretaker for a loved one with AIP click here.
The Caregiver Support Group strives to provide a forum to ask questions, share advice, experiences and provide a sounding board for those going through similar circumstances.
Our goal is to eventually provide multiple resources to assist caregivers in their day-to-day lives. This is your community and your input will help shape this service. Whether you are a spouse, partner, relative or friend of a porphyria patient, we want to hear from you. Contact the American Porphyria Foundation or email us at for more information.
We respectfully request that only caregivers of patients in the active process of diagnosis or with a diagnosis of a porphyria participate i…

When To See The Doctor

Routine visits: Generally, everyone should routinely see their doctor, dentist, and eye doctor for preventive care. Women should routinely see their primary care doctor or gynecologist for gynecologic examinations. People can obtain a schedule of what type of care is required and how often visits are needed from their primary care doctor. Usually, infants and older people need more frequent preventive visits, but frequency also depends on a person's health conditions. For example, a person with diabetes or a heart disorder (or risk factors for them) may need to have checkups relatively frequently. Visits for a problem: When symptoms or other medical problems develop between preventive visits, people may be unsure whether they need to see a doctor. Many symptoms and problems can be handled at home. For example, most routine colds do not require a doctor's attention. Many small cuts and abrasions can be handled by first cleaning them with mild soap and water, then applying an a…

Hospital Patients Rarely Wash Their Hands, May Spread Disease

Hospital Patients Rarely Wash Their Hands, May Spread Disease By Madeline Kennedy October 23, 2014 80 comments PrintEmail

NEW YORK (Reuters Health) - Hospitalized patients who don't wash their hands may be contributing to the spread of hospital-acquired infections, say Canadian researchers. After tracking hundreds of patients in a transplant ward for nearly a year, the study team found that patients washed their hands after less than a third of bathroom visits, and washing or hand-sanitizer use happened only rarely after patients entered or left a room. "We know that certain infections can be spread on people's hands, and hand washing is an important way to prevent those infections," said the study's lead author, Dr. Jocelyn Srigley, associate medical director of infection prevention and control at Hamilton Health Sciences in Hamilton, Ontario. The role of healthcare workers in transferring infectious microbes from place to place and person to person in hospitals h…

Devising a diet with Porphyria

Devising a dietDietary recommendations such as those listed above need to be translated into a diet plan for the individual. This is best done with the advice of a physician and the help of a dietitian. It is standard practice for a physician to prescribe a diet for an individual and for a dietitian to assist the patient in devising an individualized meal plan. The following are some considerations in devising a dietary plan to achieve the goals of a dietary prescription. Food intake should be consistent but should take into account lifestyle and physical activity. The total daily energy intake should be distributed consistently with at least three regular meals each day. Total energy intake must be individualized, because it varies with age, sex, and body weight and is affected by physical activity. It can also be greatly altered by illness. (Dietitians employ standard methods to estimate daily energy requirements. One of these methods is the Harris-Benedict equation.)