Members & Followers

Thursday, January 29, 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 bloods on the boil, Who when the sun comes out, And, lack of understanding for all our toil. We ‘make a fuss.’ Swelling and itching all part of the course, We have a genetic condition you see, When into the sun we are forced. And it goes by the name of, With large floppy hats, long sleeves and gloves, Erythropoietic Protporphyria aka EPP. Covered all up from our heads to our toes. Isolation is its game, What a funny sight to see, While others play and have fun, People like us who suffer from EPP. We hide indoors away from the sun.

 If you have a talent to use for porphyria, please contact the APF. 1-866-APF-3635

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

Tuesday, January 20, 2015

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!"

Monday, January 19, 2015

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’s contact information. Watch the website often
as the section will be updated often. Experts are also listed for an appointment. If you have a great doctor, please
contact the APF.  (1-866-APF-3635)

****Note we cannot validate the level of knowledge of any of the listed doctors other than the porphyria
experts. See porphyriafoundation.com.

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


Thursday, January 15, 2015

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. Thudichum described
the spectrum and fluorescence of these red porphyrins after he published his first book on the analysis of urine.
Based on that, in 1871, Felix Hoppe-Seyler (photo L) crystallized hematin and described it’s
spectrum. He then demonstrated that the crystalline form differed from one animal species to
another. Using his own newly constructed gas pump, he found that oxygen formed a loose, dissociable
compound with hemoglobin, which he called "oxyhemoglobin." He renamed the iron
free hematin ‘hematoPorphyrin.’ He is a German physician known for his work in establishing
biochemistry as an academic discipline. Felix was the first to obtain lecithin in a pure form and
introduced the word proteid (now protein). Additional contributions included metabolic studies
and researches on chlorophyll and blood, and especially abovementioned hemoglobin, which he
obtained in crystalline form.
In 1874 - Dr. J.H. Schultz first described a case of a 33-year-old male weaver who suffered
from skin sensitivity, an enlarged spleen and reddish urine from infancy. He called the condition
pempigus leprosus. His was most likely the first description of protoporphyria (EPP). Dr. Schultz
was later credited with giving the disease it’s name.In 1880 MacMunn described a patient’s dark
reddish urine during an attack of acute Porphyria. Shortly after in 1888, sulphonal was introduced
as a hypnotic drug, Joseph Stokvis (photo L) had a patient, who, after taking the drug, excreated
the tell-tale dark reddish urine typical of porphyria. The elderly woman then
became paralyzed and died. Stokvis deducted that the pigment in her urine was
the hematoporphyrin. Based on that experience, in 1889 B. J. Stokvis published the first case and
clinical description of acute hepatic porphyria. CEP porphyria was identified in the year 1923.
In 1930, Hans Fischer (photo R), the Nobel laureate, described heme as the compound
that makes blood red and grass green. By 1937 Dr. Waldenstrom in Sweden published his findings.
For a time AIP was known as Swedish porphyria, or Waldenstrom's porphyria. In the 1960's
porphyria research began in earnest in Europe and in the US. The big break came when scientists
were able to recognize ALA and PBG in the 60's. Overall, by the 1960s, all known types of porphyria
had been identified and environmental factors were shown to affect the disease course. Research in the 1980s
and 1990s led to the identification of the molecular defects in each type of porphyria. 

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

Tuesday, January 13, 2015

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. They are important in everyone's diet,
because they provide us with fuel for our bodies, as well as a wide variety of vitamins and minerals in many of the
carbohydrates. Starches are "complex carbohydrates" (l) and tend not to be as sweet as sugars. Starches are called
"complex" because they are larger molecules and take longer (compared to sugars) for our bodies to break them
down for use as an energy source. Some starchy types of foods include: potatoes, pasta and bread. Sugars are
"simple carbohydrates”, (l) meaning their molecules are not that big and are quickly broken down in the body. They are quickly absorbed into our bodies as an energy source. These sugars may be found naturally
in foods, such as fruit, fruit juice, some vegetables, and milk and milk products.
Sugars are also found in higher levels in foods like honey, table sugar, candy, syrups and
regular soda pop. Note that this last group of foods, although high in sugar, lack vitamins,
minerals and fiber. Starches and sugars eventually break down into a substance called glucose,
which is used as fuel by the body. When carbohydrates are broken down into glucose
in the body, it may help minimize the over-production of porphyrins in the liver. Because this
seems to be such a simple treatment, it is not adhered to by some who don’t understand that this simple treatment
involves a very complex mechanism. The guidelines suggest that when a person is having symptoms of porphyria,
the carbohydrate intake be increased. In fact, some people help prevent attacks by maintaining a high carbohydrate
intake daily.

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

Tuesday, January 6, 2015

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 about porphyria and answering your questions at the Patient Meeting. Dr. Bottomley has been a major force in the pophyrias for decades.  In fact, she wrote the most recent porphyria chapter in the prestigious Winthrops Medical Textbook.  Dr. Bottomley can be seen, too, in the Porphyria Live DVD, that can be purchased on the APF website or received free with each donation.  Attending a Patient Education Meeting is a great way to learn from and teach others with porphyria. 
You will receive a notice with all the details of the ride and the National Patient Meeting.  With a $30 donation to the APF, you can purchase a Shadow Ride T-Shirts with above logo.  See at theshadowride.com
Contact the APF to order your T-Shirts with a $30.00 donation.  Your donations will support the physician education program.  Drag out your cowboy hats and boots and join the Partner Round Up.  If you are willing to help with the Oklahoma City meeting or the Kick Off ride, please contact the APF.


1-866-APF-3635


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

Friday, January 2, 2015

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 low
Recently, 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 Foundation, and I was happily waiting to receive the information packet. When it arrived, I was set and ready to read the Porphyria booklet from cover to cover. I started reading, but every time I got to the symptoms section I kept closing the book. I kept getting stuck on “mental afflictions”, but thought they do not apply to me.
It is morning, and I am awake. I feel as though I arise into a world that is not my own. A world formed from the elements of the earth that my body cannot withstand: the sun, UVA and UVB rays, weeds, trees, mold, grass and a variety of foods. I was once meeting with a doctor and he told me I was in denial of my condition, which was true at the time. I just wanted it to be a bad dream, and I would awake lying on the beach soaking up the sun.
But this is my reality and I too have to except it. I was in a dark place. I felt as though I was in a hole unable to crawl out. I have the support of many wonderful friends and family members that are concerned about me, but, during those times of depression I shut off mostly everyone. I didn’t answer my telephone nor returned calls to those who cared.
I had to find a way to pull myself up out of the self-pity I was wallowing in. I was so tired of the pain, nausea, no appetite, weight loss and the constant medical bills that kept pouring in. One day, with the help of friends, I pulled through. I had to remind myself that this too shall pass. I have been here before and made it. I was focusing on what maybe yet to come and not on what was taking place in the moment; that I am surrounded by a loving family and friends who love me as I am and concerned about my well-being. And that God has always been my rock, provider and protector. I am learning to be content.
I also had to make a decision to take better care of myself by keeping my medical appointments that were regularly scheduled. Yes, I do get tired of going to the doctors. I recently joined the YMCA so that I can strengthen my body and clear my mind. At times, workouts can be painful especially during times of muscle weakness or mild crisis. But with a new determination I arise. I thank God for my parents, sisters, daughters, granddaughters and friends that are understanding and encourage me to take better care of myself regardless of my situation.
I have made an appointment with a psychologist. This time I do plan on building a relationship with this individual to help me cope with these issues and find things to do that I enjoy. I do not know why I feel so selfish when I have to make decisions for myself and my well-being regardless of how others feel. I do think that the medical issues I had last year changed me and my body.
I am satisfied with seeing my new psychologist, being able to speak freely about how I feel and to help me cope with daily living. We know that living with Porphyria is very painful and difficult to carry out everything we have planned. I have just learned to expect the unexpected and that I have to be prepared for any changes in my life. From what I have gone through in the past reminds me that I can cope with the future. I am making it one day at a time.
I had to remove some individuals from my life that just could not understand my illness or caused me stress and it made me feel better. I am spending time concentrating on myself, eating more, walking daily, spending time in the gym and surrounding myself with friends and family that make me laugh and do not try to fix me.
I love myself just the way I am. I was beautifully made by the hands of God. He knew me while I was in my mother’s womb. So he was aware of my situation and is prepared to help me through it.

Nathan Carr 2/13/2014

Thank You for sharing your personal journey with us Nathan.

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