Skip to main content

Finding A Doctor

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.
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.

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!"

Comments

Popular posts from this blog

WHAT IS NEUROPATHIC PAIN?

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

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: Porfyriforeningen.dk (Porphyria Association Denmark)Denmark: Porfyrier.dk (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…

Happy Winter Season!

                  Happy Winter Season!