Friday, September 27, 2013

Questions from Facebook and U.S. Porphyria Labs

Many of you have also FB and ask where to send your labs to here is some additional Information for you and your healthcare team.

U.S. Porphyria labs

There are only a few laboratories in the United States that can perform the complex analysis to diagnose Porphyria. The laboratories listed with a ** are overseen by a Porphyria expert who can consult with your physician about your test results. It is always best to have your doctor's office call the laboratory before sending samples to verify collection and shipping instructions.
University of Texas Medical Branch**Porphyria Center
Dr. Karl Anderson
RT-J 09 Ewing Hall
Galveston, TX 77550
(409) 772-4661
ARUP Laboratories**
University of Utah

500 Chipeta Way
Salt Lake City, UT 84108
(801) 583-2787
Fairview University Diagnostic Laboratories
University Campus, Mayo Bldg., Room D-293
420 Delaware Street SE (UH-198)
Minneapolis, MN 55455
Please note: This lab does urine tests on site; blood and stool samples are sent out to the University of Texas, Galveston Porphyria Laboratory for testing and interpretation.
Mount Sinai Medical Center**
Department of Human Genetics

Dana Doheny, MS, CGC, Genetic Counselor
Porphyria DNA Testing Laboratory
Department of Human Genetics & Genomic Sciences
Mount Sinai School of Medicine
1425 Madison Avenue, Room 14-74, Box 1498
New York, NY 10029-6574
Tel: (212) 659-6779
DNA testing for six porphyrias: AIP, HCP, VP, f-PCT, EPP, CEP
Quest Diagnostics
33608 Ortega Highway
San Juan Capistrano, CA 92690
(800) 642-4657
Mayo Medical LaboratoriesTel: (800) 533-1710 or (507) 266-2888
Fax: (507) 266-2888
Please note: The physician or hospital ordering the tests should phone ahead to the laboratory before ordering tests or shipping samples. Telephone consultation is provided to health care professionals only.  Direct patient consultation is not provided over the telephone.

“Remember…..Research is the key to your cure!”

Back by Popular Demand! Directions For Collecting A 24-Hour Urine Sample

Directions For Collecting A 24-Hour Urine Sample

Many, many of you have been private messaging me about the proper way to collect for your 24 hour urine sample please use this handout for the labs and with your Doctor....
Many members have asked about the proper way to collect a 24-hour urine. Here are the directions from one Porphyria laboratory. You might want to compare these directions with those from your own laboratory.
  1. Please use a dark plastic jug for collecting the urine. The urine should be protected from light during collection and during shipping. Add 5 grams of sodium carbonate, a powder that will readily dissolve in the urine, to the jug. This adjusts the acidity of the urine and helps preserve the substances the lab will be measuring. It is not toxic or irritating.
  2. A 24-hour urine collection must be started at a specific time and then ended at the same time the next day. You can choose any time that is convenient for you to start the collection. But you must also be sure that you can end the urine collection at the same time the next day.
  3. Record the time that you have chosen to start the collection. You need to start the urine collection with an empty bladder. Therefore, at exactly this time, empty your bladder and discard the urine. In other words, when you start the urine collection, you should empty your bladder and not add that urine to the jug.
  4. From that time on, add any urine that you pass to the jug. You do not need to record the time each time you urinate.
  5. During the collection, store the urine jug tightly capped in a refrigerator or place it in an ice chest.
  6. Exactly 24 hours after you start the urine collection, you should end the urine collection by emptying your bladder into the jug for the last time.
The University of Texas Medical Branch Porphyria Lab primer on testing for Porphyria is available here:

“Remember…..Research is the key to your cure!”

A Poem~ If you could live in my body

If you could live in my body


If you could live in my body,
just for a day,
maybe you wouldn’t think
that I feel okay.
You might understand
what it’s like to be tired
by just trying to live,
just doing what’s required.
If you could live in my body
you might begin to see,
that a simple drug
won’t set me free.
If you could live in my skin
you’d learn to understand
that it’s not in my head,
nor was it planned.
I don’t want your pity
or to make you resent.
But I don’t need to apologize,
or have your consent.
I am sick and I’m tired
every single day,
and it won’t help to ignore it.
So listen when I say:
it helps when I relax
with a friend and some tea.
You can’t understand
but please, believe me.

Submitted by Beth Turner

“Remember…..Research is the key to your cure!”

Tuesday, September 24, 2013

Welcome notes....

Welcome all new friends and family to the American Porphyria FB groups. We so happy that you can join us. Please take some time to take a look at the following sites to help you become more familiar with Porphyria by visiting 

You can also join the Purple Light Blog to receive stories, tips and information on how others cope with porphyria @ 

You can also call the APF@ 1-866-APF-3635 or their email is

“Remember…..Research is the key to your cure!”

Key Facts About Seasonal Flu Vaccine

Key Facts About Seasonal Flu Vaccine

Visit 2013-2014 Season: What You Should Know for flu and flu vaccine information specific to the 2013-14 flu season.
The single best way to protect against the flu is to get vaccinated each year.

Flu Vaccination

Why should people get vaccinated against the flu?

Influenza is a serious disease that can lead to hospitalization and sometimes even death. Every flu season is different, and influenza infection can affect people differently. Even healthy people can get very sick from the flu and spread it to others. Over a period of 31 seasons between 1976 and 2007, estimates of flu-associated deaths in the United States range from a low of about 3,000 to a high of about 49,000 people. During a regular flu season, about 90 percent of deaths occur in people 65 years and older. The “seasonal flu season” in the United States can begin as early as October and last as late as May.
During this time, flu viruses are circulating in the population. An annual seasonal flu vaccine (either the flu shot or the nasal-spray flu vaccine) is the best way to reduce the chances that you will get seasonal flu and spread it to others. When more people get vaccinated against the flu, less flu can spread through that community.

How do flu vaccines work?

Flu vaccines (the flu shot and the nasal-spray flu vaccine (LAIV)) cause antibodies to develop in the body about two weeks after vaccination. These antibodies provide protection against infection with the viruses that are in the vaccine.
The seasonal flu vaccine protects against the influenza viruses that research indicates will be most common during the upcoming season. Traditional flu vaccines (called trivalent vaccines) are made to protect against three flu viruses; an influenza A (H1N1) virus, an influenza A (H3N2) virus, and an influenza B virus. In addition, this season, there are flu vaccines made to protect against four flu viruses (called “quadrivalent” vaccines). These vaccines protect against the same viruses as the trivalent vaccine as well as an additional B virus.

What kinds of flu vaccines are available?

There are several flu vaccine options for the 2013-2014 flu season.
Traditional flu vaccines made to protect against three different flu viruses (called “trivalent” vaccines) are available. In addition, this season flu vaccines made to protect against four different flu viruses (called “quadrivalent” vaccines) also are available.
The trivalent flu vaccine protects against two influenza A viruses and an influenza B virus. The following trivalent flu vaccines are available:
The quadrivalent flu vaccine will protect against two influenza A viruses and two influenza B viruses. The following quadrivalent flu vaccines will be available:
(*”Healthy” indicates persons who do not have an underlying medical condition that predisposes them to influenza complications.)
CDC does not recommend one flu vaccine over the other. The important thing is to get a flu vaccine every year.

Are any of the available flu vaccines recommended over others?

No. CDC does not recommend one flu vaccine over another. This includes deciding between trivalent or quadrivalent vaccine or between injection (the flu shot) or nasal spray vaccine. The important thing is to get a flu vaccine every year. Talk to your doctor or nurse about the best options for you and your loved ones.

Who should get vaccinated this season?

Everyone who is at least 6 months of age should get a flu vaccine this season. This recommendation has been in place since February 24, 2010 when CDC’s Advisory Committee on Immunization Practices (ACIP) voted for “universal” flu vaccination in the United States to expand protection against the flu to more people.
While everyone should get a flu vaccine this season, it’s especially important for some people to get vaccinated.
Those people include the following:
  • People who are at high risk of developing serious complications (like pneumonia) if they get sick with the flu.
  • People who live with or care for others who are at high risk of developing serious complications.
    • Household contacts and caregivers of people with certain medical conditions including asthma, diabetes, and chronic lung disease.
    • Household contacts and caregivers of infants less than 6 months old.
    • Health care personnel.
More information is available at Who Should Get Vaccinated Against Influenza.

Special Consideration Regarding Egg Allergy:

People who have ever had a severe allergic reaction to eggs, or who have a severe allergy to any part of this vaccine, may be advised not to get vaccinated. People who have had a mild reaction to egg—that is, one which only involved hives—may receive the flu shot with additional precautions. Make sure your healthcare provider knows about any allergic reactions. Most, but not all, types of flu vaccine contain small amount of egg.

Who Should Not Be Vaccinated?

There are some people who should not get a flu vaccine without first consulting a physician. These include:
  • People who have had a severe reaction to an influenza vaccination.
  • Children younger than 6 months of age (influenza vaccine is not approved for this age group), and
  • People who have a moderate-to-severe illness with or without a fever (they should wait until they recover to get vaccinated.)
  • People with a history of Guillain–Barré Syndrome (a severe paralytic illness, also called GBS) that occurred after receiving influenza vaccine and who are not at risk for severe illness from influenza should generally not receive vaccine. Tell your doctor if you ever had Guillain-Barré Syndrome. Your doctor will help you decide whether the vaccine is recommended for you.

When should I get vaccinated?

Flu vaccination should begin soon after vaccine becomes available, ideally by October. However, as long as flu viruses are circulating, vaccination should continue to be offered throughout the flu season, even in January or later. While seasonal influenza outbreaks can happen as early as October, most of the time influenza activity peaks in January or later. Since it takes about two weeks after vaccination for antibodies to develop in the body that protect against influenza virus infection, it is best that people get vaccinated so they are protected before influenza begins spreading in their community.
Flu vaccine is produced by private manufacturers, so availability depends on when production is completed. Shipments began in late July and August and will continue throughout September and October until all vaccine is distributed.

Where can I get a flu vaccine?

Flu vaccines are offered in many locations, including doctor’s offices, clinics, health departments, pharmacies and college health centers, as well as by many employers, and even in some schools.
Even if you don’t have a regular doctor or nurse, you can get a flu vaccine somewhere else, like a health department, pharmacy, urgent care clinic, and often your school, college health center, or work.
The following Vaccine LocatorExternal Web Site Icon is a useful tool for finding vaccine in your area.

Why do I need a flu vaccine every year?

A flu vaccine is needed every year because flu viruses are constantly changing. It’s not unusual for new flu viruses to appear each year. The flu vaccine is updated annually to keep up with the flu viruses as they change.
Also, multiple studies conducted over different seasons and across vaccine types and influenza virus subtypes have shown that the body’s immunity to influenza viruses (acquired either through natural infection or vaccination) declines over time.

Does flu vaccine work right away?

No. It takes about two weeks after vaccination for antibodies to develop in the body and provide protection against influenza virus infection. That’s why it’s better to get vaccinated early in the fall, before the flu season really gets under way.

Can I get seasonal flu even though I got a flu vaccine this year?

Yes. There is still a possibility you could get the flu even if you got vaccinated. The ability of flu vaccine to protect a person depends on various factors, including the age and health status of the person being vaccinated, and also the similarity or “match” between the viruses used to make the vaccine and those circulating in the community. If the viruses in the vaccine and the influenza viruses circulating in the community are closely matched, vaccine effectiveness is higher. If they are not closely matched, vaccine effectiveness can be reduced. However, it’s important to remember that even when the viruses are not closely matched, the vaccine can still protect many people and prevent flu-related complications. Such protection is possible because antibodies made in response to the vaccine can provide some protection (called cross-protection) against different but related influenza viruses. For more information about vaccine effectiveness, visitHow Well Does the Seasonal Flu Vaccine Work?

Vaccine Effectiveness

Influenza vaccine effectiveness (VE) can vary from year to year and among different age and risk groups. For more information about vaccine effectiveness, visit How Well Does the Seasonal Flu Vaccine Work? For information specific to this season, visit About the Current Flu Season.

Will this season's vaccine be a good match for circulating viruses?

It's not possible to predict with certainty which flu viruses will predominate during a given season. Over the course of a flu season, CDC studies samples of flu viruses circulating during that season to evaluate how close a match there is between viruses used to make the vaccine and circulating viruses. Data are published in the weekly FluView. In addition, CDC conducts studies each year to determine how well the vaccine protects against illness during that season. The results of these studies are typically published following the conclusion of the flu season and take into consideration all of the data collected during the season. Interim studies also may be conducted that provide preliminary estimates of the vaccine’s benefits that season using data available at that time. For more information, see Vaccine Effectiveness – How Well Does the Flu Vaccine Work?
Flu viruses are constantly changing (called “antigenic drift”) – they can change from one season to the next or they can even change within the course of one flu season. Experts must pick which viruses to include in the vaccine many months in advance in order for vaccine to be produced and delivered on time. (For more information about the vaccine virus selection process visit Selecting the Viruses in the Influenza (Flu) Vaccine.) Because of these factors, there is always the possibility of a less than optimal match between circulating viruses and the viruses in the vaccine.

Can the vaccine provide protection even if the vaccine is not a "good" match?

Yes, antibodies made in response to vaccination with one flu virus can sometimes provide protection against different but related viruses. A less than ideal match may result in reduced vaccine effectiveness against the virus that is different from what is in the vaccine, but it can still provide some protection against influenza illness.
In addition, even when there is a less than ideal match or lower effectiveness against one virus, it's important to remember that the flu vaccine may protect against the other flu viruses included in the vaccine.
For these reasons, even during seasons when there is a less than ideal match, CDC continues to recommend flu vaccination. This is particularly important for people at high risk for serious flu complications, and their close contacts.

Vaccine Side Effects (What to Expect)

Can the flu vaccine give me the flu?

No, a flu vaccine cannot cause flu illness. Flu vaccines that are administered with a needle are currently made in two ways: the vaccine is made either with a) flu vaccine viruses that have been ‘inactivated’ and are therefore not infectious, or b) with no flu vaccine viruses at all (which is the case for recombinant influenza vaccine). The nasal spray flu vaccine does contain live viruses. However, the viruses are attenuated (weakened), and therefore cannot cause flu illness. The weakened viruses are cold-adapted, which means they are designed to only cause infection at the cooler temperatures found within the nose. The viruses cannot infect the lungs or other areas where warmer temperatures exist.
Different side effects can be associated with the flu shot and nasal spray flu vaccines. These side effects are mild and short-lasting, especially when compared to symptoms of influenza infection.
The flu shot: The viruses in the flu shot are killed (inactivated), so you cannot get the flu from a flu shot. Some minor side effects that could occur are:
  • Soreness, redness, or swelling where the shot was given
  • Fever (low grade)
  • Aches
The nasal spray: The viruses in the nasal spray vaccine are weakened and do not cause severe symptoms often associated with influenza illness. In children, side effects from the nasal spray can include:
  • Runny nose
  • Wheezing
  • Headache
  • Vomiting
  • Muscle aches
  • Fever
In adults, side effects from the nasal spray vaccine can include
  • Runny nose
  • Headache
  • Sore throat
  • Cough
If these problems occur, they begin soon after vaccination and are mild and short-lived. Almost all people who receive influenza vaccine have no serious problems from it. However, on rare occasions, flu vaccination can cause serious problems, such as severe allergic reactions. People who think that they have been injured by the flu shot can file a claim for compensation from theNational Vaccine Injury Compensation Program (VICP)External Web Site Icon.
More information about the safety of flu vaccines is available at Influenza Vaccine Safety.

Vaccine Supply and Distribution

How much vaccine will be available during 2013-2014?

Manufacturers have projected that they will produce between 135 million and 139 million doses of influenza vaccine for use in the United States during the 2013-2014 influenza season. An estimated 30 million to 32 million of these doses will be quadrivalent flu vaccine. The rest will be trivalent flu vaccine.

Where can I find information about vaccine supply?

Information about vaccine supply is available on the CDC influenza web site.

Why do manufacturers and distributors take a phased approach to vaccine distribution?

Influenza vaccine production begins as early as 6-9 months before the beginning of vaccine distribution. Even with this early start, it isn’t possible to complete the entire production and distribution process prior to flu season, particularly given the limited number of influenza vaccine manufacturing plants in the United States and the large number of doses that are produced each year. Instead, influenza vaccine distribution takes place in a phased fashion over a number of months. It begins in late summer for some manufacturers and vaccine products and usually completes near the end of November or early in December. This system can leave doctors and other vaccine providers with uncertainty about when they can expect to receive their full order of vaccine and can make it difficult for them to plan their vaccination activities. Manufacturers and distributors try to get some vaccine to as many providers as possible as early as possible so that they can begin vaccinating their patients.

What role does the Department of Health and Human Services play in the supply and distribution of the seasonal influenza vaccine?

Influenza vaccine production and distribution are primarily private sector endeavors. The Department of Health and Human Services and CDC do not have the authority to control influenza vaccine distribution nor the resources to manage such an effort. However, the Department has made significant efforts to enhance production capacity of seasonal influenza vaccines, including supporting manufacturers as they invest in processes to stabilize and increase their production capacity.
“Remember…..Research is the key to your cure!”

Friday, September 20, 2013

Why have a patient advocate! Important!

A time of illness is a stressful time for patients as well as for their families. The best-laid plans can go awry,
judgment is impaired, and, put simply, you are not at your best when you are sick. Patients need
someone who can look out for their best interests and help navigate the confusing healthcare system -
in other words, an advocate.
What is a patient advocate?
An advocate is a “supporter, believer, sponsor, promoter, campaigner, backer, or spokesperson.” It is
important to consider all of these aspects when choosing an advocate for yourself or someone in your
family. An effective advocate is someone you trust who is willing to act on your behalf as well as
someone who can work well with other members of your healthcare team such as your doctors and
An advocate may be a member of your family, such as a spouse, a child, another family member, or a
close friend. Another type of advocate is a professional advocate. Hospitals usually have professionals
who play this role called Patient Representatives or Patient Advocates. Social workers, nurses and
chaplains may also fill this role. These advocates can often be very helpful in cutting through red tape. It
is helpful to find out if your hospital has professional advocates available, and how they may be able to
help you.
Using an advocate – getting started
• Select a person you can communicate with and that you trust. It’s important to pick someone who is assertive and who has good communication skills. Make sure that the person you select is willing and able to be the type of advocate that you need.
• Decide what you want help with and what you want to handle on your own. For example, you may want help with:
o Clarifying your options for hospitals, doctors, diagnostic tests and procedures or treatment choices
o Getting information or asking specific questions
o Writing down information that you receive from your caregivers, as well as any questions that you may have
o Assuring that your wishes are carried out when you may not be able to do that by yourself.
• Decide if you would like your advocate to accompany you to tests, appointments, treatments and procedures. If so, insist that your doctor and other caregivers allow this.
• Be very clear with your advocate about what you would like them to know and be involved in—Treatment decisions? Any change in your condition? Test results? Keeping track of medications?
• Let your physician and those caring for you know who your advocate is and how you want them involved in your care
• Arrange for your designated advocate to be the spokesperson for the rest of your family and make sure your other family members know this. This will provide a consistent communication link for your caregivers and can help to minimize confusion and misunderstandings within your family.
• Make sure your doctor and nurses have your advocate’s phone number and make sure your advocate has the numbers for your providers, hospital and pharmacy, as well as anyone else you may want to contact in the case of an emergency.
National Patient Safety Foundation® • 268 Summer Street, Sixth Floor, Boston, MA 02210
(617) 391-9900 • • © 2003

“Remember…..Research is the key to your cure!”

Thursday, September 19, 2013

Tom Collier and his Life with EPP

Tom Collier

Type of Porphyria: 
Erythropoietic Protoporphyria (EPP)
Tom Collier with wife, NancyTom Collier and his brother both suffered the symptoms of Erythropoietic Protoporphyria nearly all their lives, but until recently they had no explanation for their photosensitivity.  Diagnosis finally came when Tom was 64 years old, after a lifetime searching for answers.
As far back as he can remember, Tom’s problems in the sun started when he was three years old.  He remembers running around screaming after being in the sun, and having a horrible stinging, burning pain all over his hands, arms and legs. Tom’s parents took him to a variety of doctors throughout the 1940s and ‘50s to diagnose his problem, but like many children with EPP he had no visible symptoms at all.  He didn’t swell up, and he didn’t get red, his parents just knew he was suffering from terrible pain when he went out of doors.
Tom finally heard of porphyria when his brother caught mention of the disease a little more than five years ago and thought the description matched both of their symptoms.  Tom started hitting websites and decided that EPP fit the bill for the problems he’d had all his life.  He says:  “nothing else came close.”  Looking for a doctor who could help him, he found Dr. Micheline Mathews-Roth, a dermatologist and EPP expert in Massachusetts, and Dr. Joseph Bloomer, a hepatologist and EPP liver expert in Alabama.  Both doctors have studied porphyria both in patients and in the laboratory for more than 30 years and have served on the APF Scientific Advisory Board since its inception.
Dr. Bloomer ordered lab tests and sent them to the porphyria center at the University of Texas Medical Branch in Galveston, where Dr. Anderson’s lab quickly made the diagnosis of EPP.  Shortly afterwards Tom called Dr. Roth in Massachusetts and spoke with her at length.  He had the FEP test (one of several recommended annually for people with EPP) and now has a general practitioner who has two other patients with porphyria.
A lifetime’s worth of severe sensitivity to the sun had already taught Tom to be careful, so by the time he was diagnosed he was already used to covering up outside, and not spending a lot of time out of doors in the daylight hours.  He says when he first sets foot outdoors the sun feels warm on his skin, just like it does for anybody else.  But before long his skin becomes just a little bit uncomfortable, and that’s his signal that it’s time to get indoors right away.  After the discomfort comes the prickling, stinging, burning pain that is familiar to those with EPP.
Stepping into the shade when he is unavoidably out of doors is helpful to Tom, but he does get EPP symptoms from indirect light as well and unfortunately his symptoms are triggered more quickly on exposure to light than they once were.  Indoors, he feels the sting of fluorescent bulbs (like the kind used in most stores and hospitals), and incandescent bulbs bother him somewhat too.
These days Tom is thinking about having photoprotective window films installed on the glass in his home.  When he’s out driving, Tom wears long-sleeved shirts and gloves at all times.
It is very easy for porphyria patients, or those with any rare disease, to become impatient with the pace of medicine and the lack of a cure.  But keep in mind how far we’ve come in the past 70 years:  from a little boy who screamed in pain and whose parents could find no answers, to a name for the disease, a clear genetic marker for it, and a straightforward diagnostic procedure for ferreting it out.  Porphyria patients today owe a tremendous debt not only to the doctors who worked with little recognition and no reward to discover the biological secrets of the disease, but to patients like Tom as well, whose experience helped doctors learn, to all of our benefit.
“Remember…..Research is the key to your cure!”

Saturday, September 14, 2013

What is HEP?

Hepatoerythropoietic Porphyria (HEP)

This very rare type of Porphyria is also due to a deficiency of uroporphyrinogen decarboxylase (UROD). The enzyme deficiency is inherited as an autosomal recessive trait. The manifestations of HEP resemble CEP, with symptoms of skin blistering usually beginning in infancy. Porphyrins are increased in bone marrow and red blood cells, in contrast to PCT, as well as liver, plasma, urine and feces.

“Remember…..Research is the key to your cure!”

Friday, September 13, 2013

Need more Z Z Z's?

Depression and Sleep: Getting the Right Amount

Lack of sleep can upset your biologic clock and make your depression worse. At the same time, depression can influence your sleeping habits.

Medically reviewed by Pat F. Bass III, MD, MPH

A change in your sleep habits is one of the most common effects ofdepression. Lack of sleep can start before depression, be a symptom of depression, and make depression worse.
"Depression and sleep are closely related," says Prashant Gajwani, MD, associate professor and vice chairman of clinical affairs in the department of psychiatry and behavioral sciences at the University of Texas Medical School in Houston. "Depression is a brain illness, and it affects many types of brain functions, including the sleep-wake cycle. Once this biologic clock has been disturbed, it can make sleep even more irregular and that adds to the depression. It can become a vicious cycle for many people."
Effects of Depression on Sleep
People with depression commonly experience disturbed sleep patterns, but the way depression affects sleep varies widely.
"Difficulty getting enough sleep is a major symptom for most people with depression, but for about 10 to 20 percent of people, the effects of depression result in sleeping too much," says Dr. Gajwani. Depression commonly causes:
  • Difficulty falling asleep
  • Difficulty staying asleep
  • Waking up early in the morning
  • Oversleeping
  • Sleeping during the day
  • Poor quality of sleep
  • Waking up feeling tired

Effects of Sleep on Depression
The amount of restful sleep you are getting can affect your emotional health. "Lack of sleep for a long enough time can cause depression," says Gajwani. Although it is unlikely that lack of sleep alone is responsible for most cases of depression, it may contribute to depression in some people. The fact that many people who have sleep problems develop depression may indicate that sleep disorders and depression have similar causes or risk factors. Links between depression and sleep have been found in many studies, for example:
  • Research shows that people with insomnia have a 10-fold higher risk of developing depression.
  • Other types of sleep-related disorders, like obstructive sleep apnea and restless leg syndrome, are associated with high rates of depression. For people with obstructive sleep apnea, depression often improves with apnea treatment.
  • Research shows that children with depression who experience a lack of sleep or who sleep too much are more likely to have longer and more severe episodes of depression.
  • Experts suspect that chronic lack of sleep caused by physical illness is one reason older people have higher rates of depression.

Tips for a Good Night's Sleep
If you’re having a hard time sleeping at night or you are sleeping away too much of the day, following some healthy sleep habits may help. To start, set a bedtime schedule. "It is very important for people with a history of depression to keep regular hours of sleep,” says Gajwani. “You should go to bed about the same time and get up about the same time, and use your bedroom only for sleep or sex." Here are some other tips to sleep by:
  • Exercise. "Make sure to get regular exercise and spend some time outdoors in the sunlight every day. This is a good way to set your biologic clock, and it helps maintain a regular sleep-wake cycle," says Gajwani.
  • Skip the nap. Avoid afternoon naps, which can lead to nighttime insomnia.
  • Limit caffeine and alcohol, especially later in the day.Caffeine is a stimulant and can keep you wide awake, while alcohol can disrupt sleep quality. "Alcohol before bedtime will interfere with sleep,” warns Gajwani. “It may help you fall asleep, but you are less likely to sleep through the night."
  • Get up if you can’t sleep. "Don't waste time lying in bed looking at your clock," says Gajwani. If you find yourself lying awake, the best thing is to get up and do something relaxing until you feel tired.
  • Shut off the TV. "Avoid watching television late at night. Most shows in the evening are too stimulating and do not promote good sleep,” says Gajwani. “It's better to read a book or do a relaxing activity in the hours before bed."
  • Practice good sleep hygiene. This includes using your bedroom primarily for sleeping and sticking to a regular sleep schedule. Avoid distractions in your bedroom, like phones, computers, too much light, and too much noise. Make sure your bed is comfortable and that the room temperature is comfortable for sleeping.

Changes in sleep patterns can be an effect of depression or an early warning sign of it. Let your doctor know if you are not able to sleep or if you are sleeping too much. "Over-the-counter sleep aids are not a good solution for people with depression and sleep problems,” says Gajwani. “Practice good sleep hygiene, get regular exercise, and work with your doctor or therapist to get your depression under control." Taking care of yourself, including getting the right amount of restful sleep, can help you manage your depression.
Sweet dreams everyone!

“Remember…..Research is the key to your cure!”

Wednesday, September 11, 2013

American Porphyria Foundation Media News

Even for some of the best minds in medicine, porphyria can be puzzlement. When porphyria is unrecognized, patients are often given medications that worsen their condition, undergo multiple unnecessary and dangerous surgeries, or suffer permanent skin damage, severe liver disease or other complications that could be avoided if the disease were better recognized.
Porphyria is known as "the little imitator," because it mimics so many more common conditions. Acute porphyria has been called the "Tic-tac-toe disease," because before the advanced imaging technologies (C/T, MRI, ultrasound) we have today were developed, doctors would perform multiple surgeries in search of the source of a patient’s abdominal pain, leaving scars in the shape of a Tic-tac-toe game.
Different types of porphyria (and its misdiagnoses) have been featured on Discovery Health's Mystery Diagnosis, and on dramas like House, CSI, and ER. Patient stories have been covered in publications ranging from Ladies' Home Journal to online sports news outlets.  There are works of popular fiction and non-fiction about porphyria, notably Isabel Allende's memoir, Paula, written while the author’s daughter lay in a coma brought on by an acute attack.
The APF welcomes media attention to these fascinating and troubling diseases. If you are a member of the media, we hope you will use the information you find here in your stories, and we ask that you credit the American Porphyria Foundation as your source. We encourage you to share our website address,, and our toll-free telephone number, 1-866-APF-3635, with your audience as well.
Please call our office for additional information.

Porphyria in the Media

"Perplexing Pain," a mysterious case story of acute porphyria from the New York Times, Sunday Magazine November 1, 2009. (Page 1Page 2)
"Rare genetic disorder doesn't slow down boys," two brothers in a small Texas town deal with erythropoietic protoporphyria (EPP) from the Vernon Daily Record April 9, 2010. (12,3)
"The Mystery Illness" of Congenital Erythropoietic Protoporphyria (CEP) on Dr. Dean Edell's Medical Journal, ABC-TV 1986. (on
Please contact us for a complete listing of print, radio and television features. 1-866-apf-3635

“Remember…..Research is the key to your cure!”

Tuesday, September 10, 2013

Fundraiser or Special Event Volunteer

Fundraiser or Special Event Volunteer

It's about that time when the cooler weather hits and we do some out door races, running, skiing or out door fun activity have you considered  holding a special event and awareness 
for the American Porphyria Foundation?  Let's get creative, involved and work together!

Let's have some FUN!
Thanks to the efforts of our fund-raising volunteers, revenue generated through special events fundraising helps the APF link members through the In Touch network, fund research, and educate physicians, patients and the general public about porphyria. There are many creative ways to raise money, and we can guide you in designing a fundraiser that will be easy for you to run. Some people enjoy hosting community events like a run or a raffle. Others prefer neighborhood events like a spaghetti dinner or bake sale.
Many of our members have written a letter to their family, friends, co-workers or religious community to let them know how the APF has helped them and asking recipients to give to the APF. Doing this will help educate others about a condition that has deeply affected your life, and help other porphyria patients at the same time.
Many families have had success asking people to donate in honor of a birthday, or in memory or honor of someone special to them.
Be sure to let people you write to know:
1) What you are asking them to do and why;
2) What porphyria has meant to you;
3) How the APF has affected your life; and
4) How to donate.
Before you begin planning a fundraiser, please contact us at the APF office (866-APF-3635 or 713-266-9617). Remember, we are here to help you meet your fundraising goals. We can help you brainstorm, provide suggestions and put you in touch with others who have organized similar events. Thank you for your help, and happy fundraising!

“Remember…..Research is the key to your cure!”

Monday, September 9, 2013

The Bogus Connection between "MCS" and Porphyria Stephen Barrett, M.D.

The Bogus Connection between
"MCS" and Porphyria

Stephen Barrett, M.D.

Porphyria is a well-defined group of disorders caused by abnormalities in the chemical steps that lead to heme production. Heme, a molecule needed by all of the body's organs, is found mostly in the blood, bone marrow, and liver. Heme is a component of hemoglobin, the molecule that carries oxygen in the blood [1].
The signs and symptoms of porphyria vary among the types. Some types (called cutaneous porphyrias) cause the skin to become overly sensitive to sunlight. Exposed skin may develop redness, blistering, infections, scarring, changes in pigmentation, and increased hair growth. Other types of porphyria (acute porphyrias) mostly affect the nervous system. Appearing quickly and lasting from days to weeks, acute signs and symptoms include abdominal pain, vomiting, constipation, and diarrhea. During an attack, a person may also experience muscle weakness, seizures, fever, loss of sensation, and mental changes such as anxiety and hallucinations. Two forms of porphyria have a combination of acute symptoms and symptoms that affect the skin [1]. Most forms of porphyria are inherited.
In contrast, "multiple chemical sensitivity" ("MCS") is a medically disputed term used to describe people with multiple troubling symptoms they attribute to environmental factors. Many such people are seeking special accommodations, applying for disability benefits, and filing lawsuits claiming that exposure to common foods and chemicals has made them ill. Their efforts are supported by a small network of physicians who use questionable diagnostic and treatment methods. Practitioners who promote MCS as a diagnosis claim that it is caused by extremely low levels of chemical substances found in the environment. However, no scientific tests have ever been able to detect an organic basis for the diagnosis, and no major medical organization recognizes MCS as a clinical disease. Instead of testing their claims with well-designed research, its advocates promote them through publications, talk shows, support groups, lawsuits, and political maneuvering [2].

Shifting Claims

In the 1990s, partly in response to the fact that courts were not recognizing MCS as a disease, many proponent doctors began inappropriately diagnosing “disorders of porphyrin metabolism” in large percentages of their patients [3]. Although the porphyrias are rare, these doctors claim that many MCS patients have porphyrin abnormalities and that the same environmental substances can trigger both conditions [4]. Their strategy was laid bare in a 1996 article in Our Toxic Times which said that diagnosing one of the porphyrias was advantageous because “they have a recognized diagnostic code” and “doctors who don’t know about MCS or don’t believe in it do believe in porphyria.” [5] Another issue of the newsletter contained a “porphyria symptom check list” of about 90 “possible symptoms.” [6] Porphyrias do not have that many symptoms.
Expert reviewers have concluded that the proposed relationships between MCS and porphyrin disorders should be considered “speculative and unestablished” and do not justify using any measures that are appropriate for treating porphyrias [7]. In 1995, the Washington State Department of Labor and Industries and the Washington State Medical Association issued an authoritative guide to diagnosing porphyrin disorders [8].

Flawed Laboratory Testing

Most of the purported association of porphyria with MCS is based on results obtained with the urinary coproporphyrin assay, a laboratory test performed by the Mayo Clinic. However, the test has never been validated. Although "MCS" patients reportedly showed modest increases in urinary coproporphyrin excretion, this is a common finding found in many people without symptoms and also in patients with diverse other conditions such as diabetes mellitus, heavy alcohol use, liver disease, and many kinds of anemia. In 1997, two porphyria experts at the University of Massachusetts Medical Center noted these facts and warned that the test was not reliable, had not been validated, and should not be used [9]. In 1999, two Mayo researchers concluded that 56 out of 64 of the enzyme tests performed by the Mayo laboratory should not have been ordered and that there was "substantial overordering" of other tests and "inadequate physician knowledge about the interpretation of test results in the evaluation of acute porphyria." [10] Their report did not reveal the fact that most of the inappropriate enzyme tests were ordered by William Morton, M.D. of Oregon Health Sciences University, who was the MCS-porphyria connection's leading advocate.

Court and Regulatory Actions

I know of three cases in which judges gave no credibility to a porphyrin-MCS connection.
In 1991, a trial court ruled that plaintiff's immune assays, including calla and porphyrin antibody testing, performed by Dr. Bertram Carnow, were inadmissible because plaintiff failed to prove that the testing was "acceptable to at least a substantial minority of the relevant scientific community." [11]
In 2001, an administrative law judge ruled against a claimant who sought compensation for alleged work-related porphyrin deficiency and relied on testimony of Dr. Morton. According to a case summary I found on the Internet:
The [Administrative Law Judge] rejected Dr. Morton’s opinion because it was clear that Dr. Morton’s opinion was not based upon the same level of intellectual rigor that characterizes the practice of experts in this field of medicine. Dr. Morton was outside of the medical mainstream and his analysis was non-scientific since his description of the disease and environmental causes was so broad as to be meaningless. He also had no scientific basis for rejecting known and accepted testing techniques which were objective, reproducible, and reliable in terms of locating levels of enzyme residue that would be created by this particular disease [12].
In 2004, the Oregon courts ruled against a woman in a similar case, which the appeals court summarized this way:
Throughout 1996 and 1997, after leaving her employment with Lane County, petitioner continued to see her physicians for complaints of chemical reactivity. In May 1997, Dr. Morton, a specialist in occupational medicine, diagnosed petitioner as having "active porphyrin metabolic dysfunction" (i.e., porphyria). He explained that people "with porphyria traits are abnormally susceptible to porphyrogenic substances," such as the fumes from certain types of chemicals and substances. He further explained that, "Once activated, porphyria symptoms do not always stop when the initiating exposure stops." In connection with a workers' compensation claim that petitioner filed with Lane County, petitioner was also examined by Dr. Burton, a specialist in medical toxicology and occupational medicine. In Burton's opinion, petitioner's history and symptoms were not consistent with a diagnosis of porphyria, and petitioner does not suffer from that condition. Burton also opined that the diagnosis of MCS given by one of petitioner's treating physicians was not a legitimate medical diagnosis. In Burton's view, physicians use a diagnosis of MCS to explain a variety of nonspecific symptoms otherwise not organically explainable [13]
In 2001, the Oregon Board charged Morton with inappropriately diagnosing "porphyria" with the result that patients received inappropriate treatment from him or other providers [14]. In 2002, rather than facing the charges, Morton agreed to retire his license [15]. Because Morton was by far the leading proponent of the MCS-porphyria connection, his "retirement" and judicial thrashings signaled the end to what Dr. Burton recently dubbed "the porphyria epidemic." [16]
Additional Information


  1. Porphyria. Genetics Home Reference Web site, Nov 2006.
  2. Barrett S. A Close Look at "Multiple Chemical Sensitivity". Allentown, Pa: Quackwatch Inc., 1998.
  3. Wilson C. Porphyrinopathies in the MCS community. Our Toxic Times 7(3):1–4, 1996.
  4. Morton W. Chronic porphyrias’ role in MCS. Our Toxic Times 6(8):22–24, 1995.
  5. Wilson C. Hallmark feature of MCS and porphyria. Our Toxic Times 7(10):1–8, 1996.
  6. Porphyria symptom check list. Our Toxic Times 7(6):20–21, 1996.
  7. Collaborative guidelines on the diagnosis of porphyria and related conditions. Olympia, Wa.: Washington State Department of Labor and Industries, Oct. 18, 1995.
  8. Daniell WE and others. Environmental chemical exposures and disturbances of heme synthesis. Environmental Health Perspectives 105(Supplement 1):37–53, 1997.
  9. Hahn M, Bonkovsky HL. Multiple chemical sensitivity syndrome and porphyria. A note of caution and concern. Archives of Internal Medicine 157:281-285, 1997.
  10. Mattern SET, Teffari A. Acute porphyria: The cost of suspicion. American Journal of Medicine 107:621-623, 1999.
  11. Newman v. Stringfellow. Case No. 165994, California Superior Court, Riverside County, Jan 17, 1991.
  12. Dr. Morton (of OHSU) opinion on porphyria rejected. NWLAA Case Law Review, July-August 2001.
  13. Judicial review. Henderson v. Public Employees Retirement Board. Oregon Court of Appeals 99-0421;A1187341, filed Dec 8, 2004.
  14. Complaint and notice of proposed disciplinary action. In the matter of William Edwards Morton, MD Before the Board of Medical Examiners, State of Oregon, Dec 3, 2001.
  15. Stipulated order. In the matter of William Edwards Morton, MD before the Board of Medical Examiners, State of Oregon, Jan 17, 2002.
  16. Burton B. E-mail message to Dr. Stephen Barrett, Jan 21, 2010.
This article was revised on January 22, 2010.

“Remember…..Research is the key to your cure!”

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