Finding a Doctor

The 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.  Especially if you plan to travel for a consultation, it is a good idea to call ahead and explain that you would like to be evaluated for Porphyria so that you can be sure you have done any necessary testing in advance.  If local video conferencing facilities are available, telemedicine consultation with a Porphyria expert is also available.

Regardless of your situation, it is best to establish a good relationship with a doctor in your area.  Developing a relationship with a primary care physician takes time and can be frustrating, particularly when you have difficulty finding a doctor who will manage your care.  In this section of the website, you will also find Tips for the Doctor's Office that may help.

If you're having trouble finding a local doctor, the following organizations' doctor finder or physician referral services could be helpful.  The APF does not recommend or endorse the doctors listed through these sites.

American Medical Association

American Society of Hematology

American Association for the Study of Liver Diseases

American Academy of Dermatology

If you would like to read about supporting programs to ensure the quality of specialists in the field of porphyria, please see our Protect Our Future campaign information.

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

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

Make 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 word count because the doctor may only have 15 minutes to spend with you.

Be sure you understand what the doctor is advising you.  If not, ask questions until you understand.  If there is not enough time for all of your questions: Ask for handouts and brochures that will give you more information or schedule another visit.

You and your doctor may have different goals for the visit. For example, your doctor may want to just check your blood pressure, while you may have worries about possible surgery.

Many things can get in the way of helpful communication; emotions, communication style, different goals and lack of time all work against us. When emotions are high, logic is low. If you find that your emotions are interfering with your visit, explain this to your   doctor. Try taking a moment to reflect on what you want to say and try again.

Lastly, you may feel that you know more about certain aspects of porphyria than your physician.  Major medical journal articles are usually best accepted than internet articles. 

After the Visit
Often patients have questions they forgot to ask.  If it is urgent, call the office right away. Otherwise, check the educational materials to see if the question can be answered there.

If you still don’t have the answer, call your doctor.  However, it is best to have the question clearly written.  Be aware that the doctor may not be able to answer your call until the end of the day, but a nurse or physician’s assistant may be able to help earlier.

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

Caretaker Support Forum

New 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 apfcaregiver@aol.com 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 in this group.

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

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 antibiotic ointment and a protective covering (see First-Aid Treatment). People with certain disorders should see a doctor sooner rather than later when new symptoms develop. For example, if people with a chronic lung disorder (such as asthma or chronic obstructive pulmonary disease) begin to have difficulty breathing or if people with a weakened immune system get a fever, they should see a doctor promptly. The immune system may be weakened by diabetes, human immunodeficiency virus (HIV) infection, use of chemotherapy drugs, or other conditions. When unsure about the need to see a doctor or other practitioner, people can sometimes call their primary care doctor for guidance. Some doctors can be contacted by e-mail for nonemergency questions. Others prefer to be contacted by telephone. Doctors cannot give set guidelines for when to see a doctor and when it is unnecessary because symptoms with the same cause vary too much and symptoms with different causes overlap too much. However, some problems clearly require a call to a health care practitioner. Open table in new window  Some Reasons to Call a Doctor* Problem Reasons to Call Cold or influenza Vomiting or inability to keep fluids down Painful swallowing Coughing that lasts more than 2 or 3 weeks Earache Symptoms that last more than 7 days Diarrhea Black or bloody stools More than 6 to 8 watery stools in children Symptoms of dehydration (such as very dry mouth and armpits, confusion, and decreased urination), particularly in children and older people Digestive problems A feeling that food is stuck in the throat Development of or change in heartburn, particularly during exercise Frequent heartburn, belching, or regurgitation Persistent or severe abdominal pain Persistent nausea General problems Symptoms that prevent participation in usual activities, particularly new or worsened shortness of breath with exertion Unexplained weight loss Dizziness or an about-to-faint feeling Persistent fatigue Sweating, especially heavy or cold sweats Headaches Severe headache that peaks in intensity within seconds Memory loss or confusion Blurred or double vision Slurred speech Loss of balance or dizziness Seizures Numbness or weakness in the arms, legs, or face Nausea Heart problems Rapid or galloping heartbeats (palpitations) Chest pain Leg problems Pain in the calves that worsens when walking Swelling in the ankles or legs Menstrual problems No periods by age 16 Sudden stopping of periods A period that lasts much longer than usual or is excessively heavy A sudden feeling of illness while using tampons Severe or disabling cramps Rash Fever of 100.4° F (38° C) or above A rash that is painful, involves swelling, or oozes Sinusitis Swelling or redness in or around an eye Problems with vision Vomiting Moderate or severe abdominal pain Symptoms of dehydration, particularly in children and older people Green, black, or bloody vomit *The list of problems and the reasons to call a doctor are only a small sample. Visits to the emergency department: In general, true emergencies should be handled by calling 911 or the local emergency service to provide ambulance service to the nearest hospital. However, deciding what qualifies as an emergency is sometimes difficult because symptoms vary greatly. Learning as much as possible about symptoms of life-threatening disorders (such as heart attack and stroke) in advance is useful, and good judgment is often required. If the problem seems possibly life threatening, the emergency department is the place to go. The following examples clearly require a visit to the emergency department: Signs of a heart attack (see Symptoms) Signs of a stroke (see Sidebar: Symptoms) Difficulty breathing Heavy bleeding Burns that are open, char, or blister the skin; that result from inhalation; that cover a large area; or that are on the hands, face, feet, or genitals Severe injury (as in a motor vehicle accident) Poisoning that causes symptoms (if symptoms are minor or do not develop, the poison control center can be called first at 800-222-1222 for advice) A severe allergic reaction (see Anaphylactic Reactions) Shock (see Shock) Sudden, severe pain anywhere Vomiting blood or coughing up a relatively large amount of blood (more than a few streaks in sputum) Sudden, severe worsening of a serious chronic disorder, such as asthma or diabetes Going to the emergency department for less serious problems may be appropriate when the primary care doctor is unavailable, such as during weekends or during the night. In some health insurance plans, calling the primary care doctor first is required in order to be reimbursed for a visit to the emergency department, unless symptoms suggest a life-threatening disorder. People should know the requirements of their insurance plan before an emergency develops. "Remember....Research is the key to your cure!"

Hospital Patients Rarely Wash Their Hands, May Spread Disease

By Madeline Kennedy

October 23, 2014

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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 has been well-studied, and staff are trained to take measures to avoid spreading infections.

But just two previous studies have looked at the potential for patients to spread infections in hospitals, to others and themselves, Srigley and her colleagues wrote online October 2 in Infection Control and Hospital Epidemiology.

The Canadian study team tracked 279 adult patients in a multiorgan transplant ward using tags attached to hospital ID bracelets that sent out ultrasound signals. Wireless receivers were installed throughout the ward to pick up the signals and track each patient's location. The system also detected every time a soap or hand sanitizer dispenser was used.

They found that patients washed their hands about 30% of the time during bathroom visits, 40% of the time during mealtimes, 3% of the time while using kitchens on the wards, 3% of the time when entering their own rooms and 7% when exiting their room.

Women washed their hands more often than men, and were more likely than men to use soap when they did. All patients were more likely to wash their hands later in the day than in the morning.

Among 1,122 visits by 97 patients to the ward's two kitchens, only 3% involved hand hygiene and less than 1% involved soap.

The researchers point to a previous study that found requiring patients to disinfect their hands four times a day significantly reduced the number of respiratory and gastrointestinal disease outbreaks in a psychiatric ward.

Srigley noted that the ultrasound observation system was not perfect and one limitation was that it, "didn't know exactly what a patient was doing in the bathroom or when they were eating, so we don't know for sure that a patient should have washed their hands at that time."

In addition, "not all patients agreed to wear the system tags so we don't know if the ones who wore the tags are reflective of all patients," Srigley said.

Despite these limitations, the new technology used in the study eliminated the problem of people changing their behavior when they know they're being watched, said Dr. Yuen Kwok-yung, chair of Microbiology at the University of Hong Kong.

Kwok-yung told Reuters Health by email, "The findings will provide important data for the formulation of hand hygiene policy."

Srigley feels that hospitals should encourage patients to wash their hands at certain times, but she is not yet sure what would be the most effective method.

Possibilities include "putting up posters, having someone talk to patients about hand washing, providing hand sanitizer or alcohol wipes at the bedside, etc.," she said, adding that more research is necessary to determine the most effective method.

"The key message is that hand washing is an important way for people to protect themselves and prevent infections, whether they're in the hospital, at home, at work, or anywhere else," she said. "Especially with influenza season coming up soon, hand washing can help to keep us all healthy."

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

Devising a diet with Porphyria

Devising a diet

Dietary 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.)

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