Friday, March 29, 2013

Allow Yourself To Take Care Of You



Allow Yourself To Take Care Of You

As soon as I woke up today, I knew it was going to be a day where I decided to take a break from life’s duties.  Around noon, I started to feel a little guilty and my shame button was triggered.  “If I sit down and rest, I’m being lazy” said my negative self-talk.
put your feet up
I took a look at my activities over the past week, packed with work, appointments and other commitments.  As I neared the end of the week, I could feel the life being sucked out of me.  I was struggling to keep my symptoms tame.
Sometimes I feel like I just don’t have any fight left in me, but I still have a hard time resting.  I think this is partly due to my personality (I’m much more like the hare than the tortoise), and partly due to our over-achiever syndrome culture here in America.  The How to Cope with Pain article Making Positive Psychological Changes talks about acceptance and how it can mean no longer struggling with the pain.  I’ve come to a point in my journey where I do accept my pain (most days) and today was a good example of this.  I realized that a) I’m exhausted, and b) I have an increase in symptoms.  So, I’m not being lazy!  In fact I’m doing something good!  I’m resting and using some tools to manage my symptoms of chronic pain.
But how did I get to this point?  Here are a couple things I do to make sure I stop and insert the rest that I need, when I need it:
1.  Stop Sign!
When I start to get down on myself for fear of being “lazy”, I need to just STOP.  Stop my thoughts (those squirrels and monkeys in my head) and be where my hands are.
2.  What do I need?
A good question to ask ourselves!  What is it that I need at this very moment?  It could be some or all of the following:  rest, stretching, food (the healthy kind of course), movie, friend, nap, good cry, nature, or connection with a Higher Power.
3.  Satisfy the need
Now that we’ve determined what it is that we need, let’s engage and get our needs met in a healthy and effective manner.  For instance, what my body needed today was rest, relaxation, healthy/nourishing food, and some restorative yoga.
4.  Be gentle
This is not a “No Pain, No Gain” situation.  We need to give ourselves grace and forgiveness.  The concept of self-love also falls under this.  Many of us with chronic pain can easily keep pushing ourselves when we should not.  We do this even though we know it can possibly increase our pain into a flare-up.  It’s okay to take a break when we need one, so give yourself permission to do so!  Take care of you!
Are there days when you feel like you’re being lazy even though you know deep down that resting is the right thing to do?  How do you overcome the feeling of guilt?  How do you allow yourself to take time to take care of yourself?  Please share your thoughts in the comments!
Remember....Research is the Key to your cure! 

Thursday, March 28, 2013

Aubrey N Brooks and CEP


    This website is for Aubrey Nichole Brooks



Before Transplant!


Now!
Aubrey was born on January 17th, 2008 to Nichole Baughman of Powhatan Point, Ohio. She was a healthy 8lbs. 13oz baby girl. Several weeks after she was born we noticed her diapers were tinted reddish-orange from her urine. After visiting the pediatrician and completing a urinalysis we were told she was fine. Throughout her first year of life she continued to have reddish-orange urine and the doctors assured us that everything was okay. She was admitted for pneumonia in March 2009 and the nurses showed a concern about her urine. They again did a urinalysis which came back negative. However, she was found to be anemic during this stay in the hospital.  From March to June she began to show signs of blistering and scabbing on her face. This then spread to her hands and she began to lose her fingernails. We were misdiagnosed and were treated for impetigo for almost three months. In early June of 2009, we were seen by Dr. Robin Gehris who made her diagnosis. We were informed that she has a rare genetic disease called Congenital Erythropoietic Porphyria (CEP), also known as Gunther's disease. There has been under 200 cases of CEP reported worldwide. As far as we know there are only 8 persons living with this today. Aubrey cannot go outside to play in the daylight because of her disease. This disease causes:
  • extreme photosensitivity to sunlight and fluorescent bulbs
  • blisters on her hands and face, which burst and scar
  • enlarged spleen
  • liver and kidney failure
  • inability to go outside
  • intense pain
Due to Aubrey's condition we are having special windows installed in our home by Amerinat Builders. They block 95.4 % of the UV rays. We also had special window tinting put on our vehicles by C & L Window Tinting and the folks at Made in the Shade found the yellow tint she also needed. This will hopefully help her from getting breakouts. Over time sun exposure will  cause her to lose the tip of her nose, ears, and fingers. In addition, CEP can cause blindness, organ failure, and a shorten life expectancy.  It is imperative that Aubrey wear 100 SPF sunscreen and sun protective clothing at all times.

Here is a link for information on all eight types of porphyria from The American Porphyria Foundation
.  Here is also a link to a great person who helped me with her sun protective clothing UV SUNGEAR. Also, Colleen at Fun Sunwear has make lots of Aubrey's clothing. You can also follow her progress by reading Aubrey's Updates throughout this experience.  Nicholas Ashby has been cured by a bone marrow transplant. To read his story click on his name.

We found out Aubrey's genetic testing results from Mt. Sinai. They found that she has two mutations. One mutation from each parent. Doug and I are both carriers of this disease. They have done testing on Abbagayle to see if she is a match for Aubrey. I banked Abby's cord blood and they could have used that for Aubrey's transplant.  Unfortunately, Abby is not her sisters keeper.

Aubrey was admitted to Children's Hospital of Pittsburgh of UPMC on January 11, 2010. She had a stem cell transplant on January 21, 2010. The donor was a 7 out of 8 match. She is doing well and to stay updated on her progress throughout this experience read her blog by clicking on Aubrey's Updates! Please keep her in your prayers. God Bless you and your family.
Picture of myself

GREAT DREAM. Ten Keys to Happier Living


GREAT DREAM. Ten Keys to Happier Living

Great Dream 400

Feeling pain!




Pain provides the body with a protective mechanism, alerting it to potential or actual damage to the body’s tissues. In the example of a bee sting, the pain receptors in the skin detect tissue damage from the bee sting. Then, the peripheral nerves send a pain signal to the brain. The brain analyzes the pain signal. In turn, the brain delivers a message back to the muscles of the arm to react.  

What is pain?


Pain is a feeling triggered in the nervous system. Pain may be sharp or dull. It may come and go, or it may be constant. You may feel pain in one area of your body, such as your backabdomen or chest or you may feel pain all over, such as when your muscles ache from the flu.
Pain can be helpful in diagnosing a problem. Without pain, you might seriously hurt yourself without knowing it, or you might not realize you have a medical problem that needs treatment. Once you take care of the problem, pain usually goes away. However, sometimes pain goes on for weeks, months or even years. This is calledchronic pain. Sometimes chronic pain is due to an ongoing cause, such as cancer or arthritis. Sometimes the cause is unknown.
Fortunately, there are many ways to treat pain. Treatment varies depending on the cause of pain. Pain relieversacupuncture and sometimes surgery are helpful.  I hope your all having a pain free day.

Rafael de la Torre and PCT


Rafael de la Torre

Type of Porphyria: 
Porphyria Cutanea Tarda (PCT)

Porphyria friends in Argentina have a center for diagnosis and treatment headed by Dr. Alcira Batlle. For more information , please see: http://www.qb.fcen.uba.ar/cipyp/

Our member, Rafael de la Torre from Buenos Aires shares his experience with PCT.

 To contact him, email: rdelatorreu@hotmail.com
In 2001 I went to consult the dermatologist about some blisters that appeared in one of my fingers. After asking me about others symptoms, he asked me to have an analysis performed by Dr. Alcira Batlle at the hospital in Buenos Aires. The result was Porphiria Cutanea Tarda.
The treatment was S-Adenosyl-L-Methione, 800 mg/ day, during 20 days, and simultaneously I received 100 mg Chloroquine, twice a week, until the levels of urinary porphyrins reached the controls. And I also had one Phlebotony of 500 ml of blood. The concentration of urinary porphyrins and plasma porphyrins was measured at the beginning of the treatment and then every week, during therapy. When normal levels were reached, chloroquine intake was suspended. Clinical recovery was paralleled with biochemical recovery. I have regular controls performed every year, and since then I have been fine, without any relapse.
With the porphiria diagnosis I went back to the dermatologist, and he told me that I have to consult one hepatologist, because I could have some liver damage. I did have, I had hepatitis C. I followed the treatment for about nine months with a combination of pills and Interpheron injections. At the end of this treatment, thanks God, I was healed.
Nowadays, I have controls performed every year for this disease, too.


Remember....Research is the Key to your cure! 


Quote for the Day

" The happiest people don't have the best of everything, they just make the best of everything" 
I do my best to live my life by this quote! 

From an AIP suffer....


Remember....Research is the Key to your cure! 

Wednesday, March 27, 2013

Peripheral Neuropathy~ Do you suffer?


I know that many that suffer from Porphyria and other diseases also suffer from Peripheral Neuropathy.  Learning about what it is how it affects us and what can we do to control our pain.  This information has been provided by the Pain Management Clinic at the Mayo Clinic.
Definition
Top of Form
Pain Management Advisor
Bottom of Form
Peripheral neuropathy, a result of nerve damage, often causes numbness and pain in your hands and feet. People typically describe the pain of peripheral neuropathy as tingling or burning, while they may compare the loss of sensation to the feeling of wearing a thin stocking or glove.
Peripheral neuropathy can result from problems such as traumatic injuries, infections, metabolic problems and exposure to toxins. One of the most common causes is diabetes.
In many cases, peripheral neuropathy symptoms improve with time — especially if the condition is caused by an underlying condition that can be treated. A number of medications often are used to reduce the painful symptoms of peripheral neuropathy.
Definition
http://www.mayoclinic.com/img/icon_envelope.gif
Bottom of Form
Peripheral neuropathy, a result of nerve damage, often causes numbness and pain in your hands and feet. People typically describe the pain of peripheral neuropathy as tingling or burning, while they may compare the loss of sensation to the feeling of wearing a thin stocking or glove.
Peripheral neuropathy can result from problems such as traumatic injuries, infections, metabolic problems and exposure to toxins. One of the most common causes is diabetes.
In many cases, peripheral neuropathy symptoms improve with time — especially if the condition is caused by an underlying condition that can be treated. A number of medications often are used to reduce the painful symptoms of peripheral neuropathy.
Symptoms
http://www.mayoclinic.com/img/icon_envelope.gif
Bottom of Form
The nerves of your peripheral nervous system send information from your brain and spinal cord (central nervous system) to all other parts of your body and back again. Nerves that may be affected by peripheral neuropathy include:
·         Sensory nerves that receive sensations such as heat, pain or touch
·         Motor nerves that control how your muscles move
·         Autonomic nerves that control functions such as blood pressure, heart rate, digestion and bladder function
Most commonly, peripheral neuropathy starts in the longest nerves — the ones that reach to your toes. Symptoms vary, depending on which types of nerves are affected. Signs and symptoms may include:
·         Gradual onset of numbness and tingling in your feet or hands, which may spread upward into your legs and arms
·         Burning pain
·         Sharp, jabbing or electric-like pain
·         Extreme sensitivity to touch, even light touch
·         Lack of coordination
·         Muscle weakness or paralysis if motor nerves are affected
·         Bowel or bladder problems if autonomic nerves are affected
Peripheral neuropathy may affect one nerve (mononeuropathy), two or more nerves in different areas (multiple mononeuropathy) or many nerves (polyneuropathy).
When to see a doctor
Seek medical care right away if you notice any unusual tingling, weakness or pain in your hands or feet. Early diagnosis and treatment offers the best chance for controlling your symptoms and preventing further damage to your peripheral nerves. If your symptoms interfere with your sleep or you feel depressed, your doctor or pain specialist may be able to suggest treatments that can help.  Please have your Doctor check with the APF safe/unsafe list for any Drug interactions.  You can click on this link: http://www.porphyriafoundation.com/testing-and-treatment/drug-safety-in-acute-porphyria

Monday, March 25, 2013

Please JOIN: Connecting Patients Globally Its Free


Connecting Rare Disease Patients Globally
About RareConnect
Living with a rare disease can be an isolating experience. RareConnect was created byEURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.
·         Understand
Learn what it's like to live with a rare disease or share your own story. Browse patient testimonies, share photos, and contact patient organizations. The “Understand” section of RareConnect promotes awareness and understanding through daily life experiences.
·         Meet
Start your global conversation here. Connect with others around the world to share support and encouragement. The “Meet” section of RareConnect provides a safe place to meet friends, ask questions, start or join conversations, and interact with others experiencing the same challenges.
·         Learn
Find quality information from trusted sources. Read publications from medical experts and patient organizations. The “Learn” section of RareConnect links to FAQs, published articles, upcoming events, and other documents providing the latest information for each disease-specific community.
·         Connect with others who understand
·         Remember....Research is the Key to your cure! 
Join up it’s FREE…..

www.rareconnect.org

MONICA'S PORPHYRIA AWARENESS WEEK EVENT




MONICA'S PORPHYRIA AWARENESS WEEK EVENT



We are excited about all of the activities our members are planning for the soon approaching Porphyria Awareness Week, April 14-20 2013.  APF member, Monica Fleegel, is hosting a very creative campaign to heighten porphyria awareness and raise funds for the APF to train future experts via the Protect the Future program.  The attendees will also be writing letters to the FDA in support of the approval of new treatments for EPP, like SCENESSE.  

Read Monica's account below:

"Last summer, Monica Fleegel First Giving pagedue to the tireless efforts of the APF, I was able to participate in Phase III clinical trials that gave me relief from the pain of EPP (Erythropoietic Protoporhyria).  For the first time in my life, I spent time in the sun with my family and friends!! The APF was able to convince the FDA of the importance of continuing the trials and now we need to inform the FDA that we need a treatment so all who suffer from EPP can spend time in the sun. Through a letter writing campaign and your donations, we can assist the APF with this major endeavor.  I am expecting up to 75 people at the fundraiser. If I can get even half to write letters wouldn't that be awesome? My friends and family loved being in the sun with me after 52 years of me being inside, so they want treatments like SCENESSE for EPP approved!"  

You can also donate through Monica's FirstGiving donation page:  http://www.firstgiving.com/fundraiser/monicafleegel/monicafleegelsfundraisingpage

Donating through this website page is simple, fast and totally secure. It is also the most efficient way to support Monica's fundraising efforts.  Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!"

We hope you will choose an awareness activity.  It may be as simple as bringing your Panhematin brochure to your doctors or taking the ER guidelines to your ER.  Some people have approached their local media to do a story on their cases of porphyria.  Watch next week for the Cook families event, HAT DAY, which will take place in all the schools in their town for PORPHYRIA AWARENESS WEEK.
 
"Remember..... Research is the key to your cure!"

Sunday, March 24, 2013

Longitudinal Study Underway The Porphyria Longitudinal Observational Research Project



Longitudinal Study Underway The Porphyria Longitudinal Observational Research Project is underway. The
objective of this protocol is to conduct a five year, multidisciplinary investigation of the natural history, morbidity, and
mortality in people with porphyrias. In addition, the purpose is a long-term follow-up study of a large
group of patients with the various porphyrias, which will provide a better understanding of the natural
history of these disorders, as affected by available therapies, and to aid in developing new forms of
treatment. You have the opportunity to be part of this important project and help advance research by
answering the most important and often perplexing questions about porphyria. As part of the research,
the patient volunteers will be followed longitudinally for long term survival, development of disease complications
and outcomes of commonly used treatments, as well as more advanced treatments, such as liver or bone
marrow transplantation. Researchers will seek to identify biochemical features (biomarkers) that may predict future
symptomatic episodes so that interventions can be initiated before symptoms develop. The patients enrolled in this
study will also be a source for other studies, including mechanistic investigations and clinical trials.
The questions researchers want answered include:
a.) In a longitudinal cohort, what is the prevalence of specific morbid indicators of disease severity, including neurovisceral
and cutaneous manifestations, levels of porphyrin precursors and porphyrins, quality of life, long term effects on
the liver, kidneys and other tissues, and case-fatality associated with the various forms of porphyria?
b.) What are the relationships between disease severity and progression and various biomarkers-biological characteristics,
such as genotypes, causative and contributing endogenous and environmental factors and levels of porphyrin precursors
and porphyrins?
c.) What is the safety and efficacy of currently used and new therapies for the porphyrias, especially in the long term?


Remember....Research is the Key to your cure! 


Safe & Unsafe Drugs




Safe/Unsafe Drugs Dr. Peter V. Tishler, who is a porphyria expert at Harvard/ Brigham and Women’s
Hospital in Boston, has been instrumental in overseeing and updating the APF Safe/Unsafe Drug
List for acute porphyria. Dr. Tishler is kindly updating the list again and wants your input. Therefore, if
you have been negatively affected by a specific drug, please contact the APF. We will then put you directly
in contact with Dr. Tishler to discuss your experience. When you report a drug, please have on
hand, the name of the drug, the dose, and a synopsis of what happened to you when you took the
drug. As you know, the Safe/Unsafe Drug List is extremely important for people with acute porphyrias,
so your input is very important. It is often a lifesaving tool for the patients and their doctors.
Dr. Tishler is a clinician/researcher in human genetics, including polycystic kidney disease, chronic obstructive
pulmonary disease, Fabry’s disease, and the porphyrias. We are fortunate to have porphyria specialists, like
Dr. Tishler, to devote himself not only to our present health needs but to help assure a healthier future for each of us.



Remember....Research is the Key to your cure! 



Porphyria Research is the Key to Your Cure


Porphyria Research is the Key to Your Cure. Unfortunately, the numbers of patient volunteers
is very small. More volunteers are needed. Please contact the APF if you are interested in
participating in one or more of the research projects below directed by these experts: Karl Anderson,
University of Texas Medical Branch, Galveston, TX; Dr. Robert Desnick, Mount Sinai School of Medicine,
NYC, NY; Dr. Joseph Bloomer, University of Alabama, Birmingham, AL; Dr. Montgomery Bissell;
University of California, San Francisco, CA; Dr. Herbert Bonkovsky, Carolinas Healthcare Systems, Charlotte, NC; and
John Phillips, Ph.D. University of Utah, Salt Lake City, UT.
• Mitoferrin-1 Expression in Patients with Erythropoietic Protoporphyria (EPP)
• A double-blind, randomized, placebo-controlled, parallel group trial on the efficacy and safety of Panhematin in
the treatment of acute attacks of porphyria
• Clinical Diagnosis of Hereditary Coproporphyria (HCP)
• Quantification of the Effects of Isoniazid Treatment on Erythrocyte and Plasma Protoporphyrin IX Concentration
and Plasma Aminolevulinic Acid in Patients with Erythropoietic Protoporphyria
• Hydroxychloroquine (HCQ) vs. Phlebotomy for Porphyria Cutanea Tarda
• EPP: Natural History, Genotype-Phenotype Correlations, and Psychosocial Impact
• A Pilot Study of Biomarkers Predicting Clinical Expression of Acute Porphyrias
• Transplantation in EPP: A Review
• Longitudinal Study of the Porphyrias
National PORPHYRIA REGISTRY
Only 650 people joined the Porphyria Registry. With so few people registering, the government funding
agencies will NOT provide funding for porphyria research. They monitor if there are enough patients to
warrant research funding. Porphyria experts created the Registry for you to share information about your
health and as a means to learn from the experiences of many patients around the country. They will then
use the knowledge to enhance diagnosis, treatment and find a cure for porphyria. Please take five minutes
and sign up for the Porphyria Registry. Then you will be contacted by one of the research team. Joining the Porphyria
Registry is anonymous and free, and all data is stored in a secure, computerized database. No personal identifying information
will be given to anyone without your expressed approval. PLEASE TELL FAMILY MEMBERS WITH OR WITHOUT
SYMPTOMS THAT THEY ARE NEEDED, TOO. Click on the Porphyria Registry button on the top line of the Home
Page of the APF website, click on Join the Registry and locate the Porphyria Research Consortium and follow directions.

Remember....Research is the Key to your cure! 

Friday, March 22, 2013

Spring Cleaning Naturally 101



·        
 
·          
·          

Clean Without Chemicals
Many people are conditioned to believe a house is not clean unless it smells of chemicals. In fact, the opposite is true. You can make your house sparkle with just a few simple supplies, many of which are already in your cupboards.

Mild Is Best

Mild dishwashing liquid is excellent for removing spills that water won't budge. Make a simple all-purpose cleaner by mixing 2 cups water with 2 tablespoons dishwashing liquid in a spray bottle. Use it on countertops and other hard surfaces.

Mild Is Best

Mild dishwashing liquid is excellent for removing spills that water won't budge. Make a simple all-purpose cleaner by mixing 2 cups water with 2 tablespoons dishwashing liquid in a spray bottle. Use it on countertops and other hard surfaces.

Natural Cleaners

Distilled white vinegar and lemon juice are both excellent for cleaning, deodorizing, and mild bleaching. They are acidic and can eliminate soap scum. Make a window- and mirror-cleaner by mixing equal parts vinegar and water, which also works well on most polyurethane-finished wood floors.

Less Is More

For routine cleaning, less is more. You actually need very few products to clean any given room. Although there will certainly be instances where specialized cleaners are necessary, the following list of products will suffice for most tasks. Gather them in a caddy so you can transport them from room to room as you work.

A Kit to Keep on Hand
Your universal cleaning kit should include:
·         An all-purpose cleaner, or a solution of 2 tablespoons mild dishwashing liquid, such as Ivory, and 2 cups water in a spray bottle
·         A mildly abrasive cleanser, such as Bon Ami
·         A glass cleaner, or a solution of 1 part white vinegar and 1 part water in a spray bottle
·         Rubber gloves; lint-free white cloths; medium-bristled scrub brush

Cleaning the Kitchen

Cleanliness isn't merely a virtue in the kitchen, the busiest room in your house: It is essential to the health and safety of your family. Corral your supplies in a bin or bucket stored in a cupboard under or near the sink. To protect the floor of the cupboard, line it with parchment paper or rubber matting.

Cleaning the Bathroom

Cleaning a bathroom well does not mean using harsh chemicals. Start with the gentlest cleaning solutions first before moving on to anything stronger. Adequate ventilation via a ceiling fan or open window will help prevent moisture buildup and go a long way toward keeping the bathroom fresh.

Remember....Research is the Key to your cure! 

EPP & Rob Saupe


Robert Saupè

Type of Porphyria: 
Erythropoietic Protoporphyria (EPP)
Robert SaupeWhen Robert was a baby, his mom went to hang up clothes outside and put him on the grass so she could watch him. After a short time, Robert started screaming and crying. For years, Robert was tested for various allergies, including grass pollen, soap and various foods. When Robert was nine years old, his mom took him to see a doctor who had just completed an internship under Dr. James Kushner, an expert in porphyrias. The doctor looked at Robert’s hands and face, suspected that he had porphyria and told him to make an appointment with Dr. Kushner.
Robert remembers going into the lab where Dr. Kushner did his testing. Dr. Kushner left the room, and when he came back he said, “Bobby, you have porphyria.” Dr. Kushner has called Robert “Bobby” ever since that day, and is the only person who calls him that. The nickname made Robert feel special. Dr. Kushner then kindly put a band-aid on Robert and wrote “slugger” on it, since Robert was starting baseball season.
Everyone in Robert’s family provided blood samples to trace the origin of his erythropoietic protoporphyria (EPP). Robert was tested every six months and at 16 he gave a core sample to be tested for research.
Robert tried beta carotene, but the cost became prohibitive. Instead, he set out to build up a tan. He says that the more pigmentation he can get built into his skin, the better he can tolerate the sun. Unfortunately, building up the pigmentation can be terribly painful.
Although Robert had his gallbladder removed as a result of a buildup of porphyrins, he does not let his EPP keep him from living his life. He goes fishing early in the morning and works outdoors. Due to his excavation job, Robert has had to manage his EPP very carefully. He protects himself everywhere he goes by wearing leather gloves, wide-brim hats, 100% cotton shirts and bandanas over his face.
Robert works hard at photoprotection and copes with his EPP with humor. When a bystander saw Robert wearing a bandana at a NASCAR race, he asked if Robert had robbed a 7-11. Robert replied: “shh, I’m in hiding.”
Robert is very excited about participating in the Afamelanotide trials in Salt Lake City. He recently reconnected with his 22 year old twins, who live in Salt Lake City. Robert says that years ago he was a bad character, but he gave his life to the lord and completely changed. Robert now talks to his children every day and enjoys hearing his son say, “Love you, Dad.” Robert has been saving for his trip and is looking forward to seeing his children.

Tuesday, March 19, 2013

Attention ALL EPP Patients, Family & Friends




EPP friends and family members please get your pen and paper out and write a letter to the FDA.  The reason --- We need to assure them that people with EPP are in dire need of a treatment.

Many health professionals and health departments have the opinion that a life style change is all that is needed for people to handle EPP.  In other words, some think that all you need to do is stay out of the sun, and you will be fine.  People with EPP and their family members need to enlighten them that this is not true by presenting facts about your lives and the lives of your loved ones.  We especially need to get this message across to FDA reviewers who will be assessing a new treatment, Afamelanotide / SCENESSE for approval.

Please take a few minutes of your time to write a letter to the FDA describing your experience with EPP, how it has negatively impacted your life and your family and how much you need a treatment for the disease.  It would be helpful if those of you who were in the Phase II and Phase III trials and received the "real drug" share how the treatment changed your life in a positive way.   Those who received the placebo can explain how much you desire effective treatment. 

Your letters will accomplish far more than you can imagine.  All you need to do is write the letter and address it to

Margaret Hamburg, M.D.
Commissioner, Food and Drug Administration
10903 New Hampshire Ave
Silver Spring, MD 20993-0002

*BUT DO NOT MAIL IT TO THEM*.  Rather, send it to the APF, so that we can deliver all the letters to the FDA personally.  We also ask if a few EPP patients who live in the DC area and  are willing to speak with them in person would like to attend the meeting, as well.  If you are willing to participate, please contact Desiree at the APF office  1.866.APF. 3635

This is a simple but important task that will only take you minutes.   You have the opportunity to have a new treatment for EPP.  Our researchers have worked very hard to complete the research for FDA approval. Please honor their work with your letter. 

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

Thank you,

Desiree Lyon Howe

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.
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! 

Get Involved with the APF!

Get Involved

Become a member of the American Porphyria Foundation today, and join us in our work for your good health!
When you join the APF, you become an integral part of an organization that empowers patients and helps them on the road to accurate diagnosis, proper care, and some day a cure. Adding your voice to ours makes us all stronger as we address our needs to health care providers, local, state and federal agencies and Congress.
Members of the American Porphyria Foundation receive:
  • Our quarterly newsletter — news about porphyria research and clinical studies, scientific meetings and member get-togethers, and stories about the doctors working in the porphyria field and about members like you;
  • Access to the APF In Touch network — the ability to connect with others who share your diagnosis;
  • Free participation in telephone conference calls with top researchers in the porphyria field;
  • Knowledge—that you are an important part of keeping reliable medical information about porphyria available to those who are newly diagnosed, or at a crossroads in their porphyria treatment, and frightened;
  • And much more!
The American Porphyria Foundation relies on member support to sustain programs like this website and other literature written or approved by porphyria experts.
U.S. memberships are $35 annually; international memberships are $45. The APF is a U.S. 501(c)(3) non-profit organization. All donations to the APF are tax deductible.
Join the APF by phone, mail, fax, or online.
To join by phone with your VISA or MasterCard, call us toll-free at 1-866-APF-3635 Monday-Friday from 9:00 a.m. to 4:00 p.m. Central Time. To join by mail or fax, please click here to complete and print the donation form.
Unable to pay? In case of need, we can waive the yearly $35/$45 membership donation. Simply write us a letter requesting that we waive the membership, sign and send it to the address below. We cannot accept waiver requests via email or telephone.
American Porphyria Foundation
4900 Woodway, Suite 780

Houston, TX 77056

Work with us!

The American Porphyria Foundation welcomes donations of your time and talents too. Would you like to volunteer or raise money for the APF, organize or attend an event, in addition to informing yourself about the porphyrias? If so, welcome! You’ll find lots more information in this section of our website on opportunities to get involved in our, and you can always call our office for help: 1-713-266-9617. Ask for Mira.
The APF is here to serve, and we’re proud to have you with us.

Remember....Research is the Key to your cure! 

IMPORTANT EPP MEMBERS

IMPORTANT EPP MEMBERS~ “We need your help in our campaign to approve Scenesse” If you or someone you know is in the  EPP MEDICAL  ...