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Showing posts from September, 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…

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. 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. 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 sur…

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!”

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 On this PageFlu VaccinationVaccine Effectiveness Vaccine Side EffectsVaccine Supply and Distribution Visit2013-2014 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…

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 ca…

Tom Collier and his Life with EPP

Tom Collier Type of Porphyria:  Erythropoietic Protoporphyria (EPP) Tom 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 thoug…

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!”

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. By Chris Iliades, MD 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 Peo…

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…

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…

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 menta…