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Showing posts from January, 2018


Welcome February 2018
Starting 1/31/18-2/1/18 Midnight. Purchase any of the following Long Sleeve Tees, Or PULLOVER Hoodies, Hats, wristbands receive one free. Please NOTE: Sizes & Price Change for XL, 2XL, 3XL. This EXCLUDES THE ZIP UP HOODIES IN GRAY OR PURPLE. & Magnets-  Follow the process ordering at:

International Orders- to UK, Canada, Europe and AUS additional Postage depending on Country by weight

Show that you are a Porphyria Warrior!!

Porphyria Cutanea Tarda (PCT) What it is and Isn't

Porphyria Cutanea Tarda (PCT) This disease is the most common of the porphyrias and results from a deficiency of the enzyme uroporphyrinogen decarboxylase (UROD). PCT is essentially an acquired disease, but some individuals have a genetic (autosomal dominant) deficiency of UROD that contributes to development of PCT. These individuals are referred to as having "familial PCT". Most individuals with the inherited enzyme deficiency remain latent and never have symptoms. PCT is one of the hepatic porphyrias. Large amounts of porphyrins build up in the liver when the disease is becoming active. The disease becomes active when acquired factors, such as iron, alcohol, Hepatitis C Virus (HCV), HIV, estrogens (used, for example, in oral contraceptives and prostate cancer treatment) and possibly smoking, combine to cause a deficiency of UROD in the liver. Hemochromatosis, an iron overload disorder, also can predispose individuals to PCT. Symptoms The symptoms of PCT are confined most…

What is Hepatoerythropoietic Porphyria? (HEP)

Hepatoerythropoietic Porphyria (HEP)What is Hepatoerythropoietic Porphyria? HEP is a deficiency of the enzyme uroporphyrinogen decarboxylase; it is the autosomal recessive form of f-PCT. The manifestations of HEP resemble Congenital Erythropoietic Porphyria (CEP), with symptoms of skin blistering that usually begin in infancy. Skin photosensitivity results in severe blistering and scarring, often with mutilation and loss of facial features and fingers. Increased hair growth (hypertrichosis) on sun-exposed skin, brownish-colored teeth (erythrodontia), and reddish-colored urine are common. There may be bone fragility due to expansion of the bone marrow and vitamin deficiencies, especially vitamin D. Red blood cells have a shortened life-span, and mild or severe hemolytic anemia often results. Synthesis of heme and hemoglobin is actually increased to compensate for the shortened red blood cell survival and is associated with splenomegaly. Bacteria may infect the damaged skin and contrib…

Tiffany England~ Stuck on you Vinyl~ Raises Awareness for APF rare disease!

Tiffany England~ Stuck on you Vinyl~ Raises Awareness for APF rare disease!
Order Here: Hi, My Name is Tiffany England. I was diagnosed with PCT and then VP at the age of 20. I've spent the last 16 years going from attack to attack, like most people do. I've had a couple years here and there where I didn't suffer from major attacks, but not often. Right now, is one of those good times. So, about a year ago I started my own Vinyl Decal business. I make vinyl stickers that can go on your car, windows, walls, phone cases, signs, notebooks, computers, and more. It is something that I can do on my own time, when I'm feeling well. It’s also something I really enjoy doing. Amy Chapman contacted me about a month ago to see if I would design one for the American Porphyria Foundation. I was so excited to do this. My hope is that they will find a cure or at least a better treatment for Porphyria in my lifetime. So, with saying this a portio…

What is ALAD & How common is it?

ALAD-Deficiency Porphyria (ADP)
What is δ-Aminolevulinic Acid Dehydratase Porphyria? ADP is a severe disorder caused by a deficiency of the enzyme δ-aminolevulinic acid dehydratase (ALAD) which results in  an increase of 5’-aminolevulinic acid (ALA) in the liver, other tissues, blood plasma, and urine. In addition, urine coproporphyrin and erythrocyte protoporphyrin are increased. ADP generally presents with sudden attacks of severe stomach pain that last for several days.
Who gets δ-Aminolevulinic Acid Dehydratase Porphyria? All of the reported cases of ADP have been males, in contrast to the other acute porphyrias. ADP is the least common of all the porphyrias with less than 10 cases documented to date. This is an autosomal recessive disease, whereas the other three acute porphyrias are autosomal dominant. Each parent of an affected individual must have a mutation in one of their ALAD  genes and both must pass their mutation on to their child.
What causes δ-Aminolevulinic Acid Dehydra…

Miss Sian - Dancing through the shadows into the light

The StorySian is a 12 year old, aspiring dancer from Topeka, KS. Her dedication, hard work, and determination has provided her a wonderful opportunity to participate in Motion 41's Summer Intensive Program in Omaha, NE. This opportunity would allow her to dance with older dancers from all over the US and learn from some amazing instructors from all over the world.  Dancers strive for acceptance to a summer intensive program! Her total cost is $1,995.  
Donate Here:

Tuition $1,000. Room/meals $995. Most summer intensives cost $4000 for tuition/room/meals!  She has a scholarship for $200, leaving a tuition balance of $800 due before May 18. I am saving money from each paycheck for the $995 room/board/meals. It will not be easy as I am a single parent. Si is working hard to earn money (baking and selling cookies, breads, pies; and doing chores). I'm afraid this may not be enough.  Money raised will go to tuition, remaini…

Keep Yourself Moving

Keep Yourself Moving “If exercise were a pill, it would be the most widely prescribed medication in the world.” (Emory University School of Medicine) Of all the things we can do for our health, few are more generally helpful than physical exercise. Exert yourself. Leading a physically active life can help us feel happier, think more clearly, have more energy, be more productive and, along with proper diet, control our weight. Exercise need not be painful or extreme to be effective. Regular periods of moderate exercise several times a week can be very beneficial. Jogging, brisk walking, biking, and taking part in active sports​—enough both to get your heart beating faster and to cause you to break a sweat—​can improve your endurance and help to prevent heart attack and stroke. Combining such aerobic exercise with moderate weight training and calisthenics helps to strengthen your bones, internal muscles, and limbs. These activities also contribute to maintaining a higher metabolism, whi…