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Showing posts from January, 2015

A Poem By Georgina Davis

Georgina Davis, who is a member of the APF EPP Facebook Group, lives north of London in Hemel Hempstead Hertfordshire. She is a very creative woman, who is quite adept at drawing, painting portraits, most crafts and writing poetry, which she began 25 years ago, after a bad bout of her other disease, Multiple Sclerosis. Georgina writes poetry to express her feelings and help others understand her EPP. She says that the Facebook groups were a Godsend for her and has thanked the APF for its efforts to promote understanding of the porphyrias to doctors and the general public and most of all for bringing porphyria people together to reduce the loneliness. 

Look at the lucky people having fun. If we dare to fit in, They can go out in the sun, My oh my, watch out for the pain to begin. Scantily clad in the heat of the day. The slightest exposure can cause such pain If we did that, oh how we’d pay. That we don’t want to go out again. But, we are rare, not many like us, Feeling as though our bl…

Here are some videos on You Tube about Porphyria.

Here are some videos on You Tube about Porphyria.
Here are some videos to understanding- What is Porphyria? How it can be treated, how Panhematin is prepared, and Expert Doctors explanations and personal stories.
 Think Porphyria
An Expert Opinion
How to Prepare and Admin Panhematin Lindsey Desiree Lyon APF
 Amy Chapman AIP
John Chamberlayne VP
Dr. Lisa Kerberg AIP
British Porphyria Association - Sue Burell AIP
Adrian EPP
Tracey Yelen AIP
Please visit porphyriafoundation.org/ 1-866-APF-3635 to receive any information for you and your medical team.  It could save your life.
"Remember.....Research is the key to your cure!"

PORPHYRIA DOCTOR FINDER

PORPHYRIA DOCTOR FINDER
Every day the APF receives requests
for a doctor who can diagnose and treat porphyria. The main question we hear
is, “Where can I find a doctor to treat me?” In the past, the APF has only given
out the names of doctors who were experts in the porphyrias, but the number of
experts is very small. However, our policy has changed a bit since there are now
5000 members and so few experts. Many of our members have told us that their
doctor has some measure of knowledge about the porphyrias and that their doctors
diagnosed and treated them well. A few years ago, we began to collect the
names of those doctors around the country and placed them on our database. We also sent out several thousand
very comprehensive Physician Education packets to doctors who were interested in learning about porphyria. At the
behest of many of you, we created FIND A DOCTOR section on the APF website. Check the FIND A DOCTOR section
and see if a city near you is listed. Then call the APF for the doctor…

A LITTLE BIT OF HISTORY

A LITTLE BIT OF HISTORY
Porphyria began at the beginning of time and has continued to mutate
throughout ensuing generations. The name "porphyria" is only rather recent. For centuries it was known as a
blood/liver disease. At one time the abdominal pain was actually thought to be from the liver. The term porphyria
itself is derived from the Greek πορφύρα, porphyra, meaning "purple pigment." The name is likely to have been a
reference to the purple discoloration of feces and urine when exposed to light in patients during an attack. Although
original descriptions are attributed to Hippocrates, the disease was first explained biochemically by Felix
Hoppe-Seyler in 1871 and acute porphyrias were described by the Dutch physician Barend Stokvis in 1889. Before,
in 1844, Gerardus Johannes Mulder determined the chemical composition of this purplish, iron free substance, which
he named "hematin." He also illustrated that hematin took up oxygen. Later, in 1867, J.L.W. Thudic…

CARBOHYDRATES IN ACUTE PORPHYRIAS~

CARBOHYDRATES IN ACUTE PORPHYRIAS~

For some individuals, who have the "acute
porphyrias" (AIP, VP, HCP and ALAD), attacks can be brought on if carbohydrates and calories are restricted for prolonged
periods of time. For example, during the Atkins diet craze, many people with porphyria
were diagnosed when their reduction of carbohydrates precipitated attacks. This is
why fasting or major dieting is not recommended. Thus, to prevent and treat attacks,
carefully monitoring one’s diet can be especially important for these types of porphyria.
Why are these three porphyrias more sensitive to diet? The pathway in the liver that
makes heme from porphyrins and other substances is very sensitive to carbohydrates in
particular. Therefore, when less carbohydrate is taken, it appears that porphyrin production
is stimulated, and the body can't use them all effectively. This porphyrin overflow is what creates the symptoms
of an attack. Carbohydrates are the foods that contain starches or sugars. …

The Reason for the Shadow Ride

The Reason for the Shadow Ride

A Cowboy Love Story    What better story than a cowboy love story? And this love story is the REASON for the Shadow Ride. 
Cowboy, Scott MacMeeken fell in love and married his beautiful bride, Michelle. All was great except Michelle has Erythropoietic Protoporphyria  (EPP).  Since Scott couldn’t change her EPP, he conceived of the Shadow Ride, a horseback adventure to enhance awareness about porphyria across the small and big cities of America and to ask all of you to join them along the way. The Shadow Ride is a horseback ride that will eventually track across the American Discovery Trail starting in 2016, but the 2015 Kick Off ride will be held in Oklahoma near Tulsa, on the prominent Hull and Drummond ranches and will be followed by a national patient meeting in Oklahoma City in April, 2015.  Soon thereafter, we will host a patient education meeting in Oklahoma City with renowned porphyria expert, Dr. Sylvia Bottomley. She will be making a presentation…

Nathan Wayne Carr ~ How Porphyria can get one feeling low

Nathan Wayne Carr ~ How Porphyria can get one feeling low
How Porphyria can get one feeling lowRecently, I posted on Facebook how I have been dealing with my mental state. I just need to reach out to my Porphyria family. For the past few months, I have not been answering my telephone or keeping medical appointments. Friends have been calling and the power on the cell has been off. I have been feeling overwhelmed, seems as if I only have enough energy to deal with me. My doctor asked me to see psychologist months ago, but I never went to the appointment. I told myself I could handle it. I definitely needed a Prozac adjustment. I am trying hard to climb out of this space, I keep a lot to myself about how I feel, but I can share with you all easily. I need to be true to myself.When I was asked to write this article regarding depression and anxiety, my mind went back over twenty years ago, when I finally received a diagnosis. I was given information to contact the American Porphyria Found…