The American Porphyria Foundation

This Year for my birthday I have decided to focus on a disorder known as Cutaneous Porphyria. It can strike both children and adults.

This disorder was once know as the “The Vampire Disease”. Those who suffer from this disorder suffer pain just as a Vampires do when when exposed to light. In addition, they have outbreaks of various types of dermatitis.

The picture I posted is a tasteful picture. If I posted others I found , I fear readers would have closed my “Go Fund Me” and not returned.

My goals for posting about Cutaneous Porphyria are making people aware of its existence. Although rare, the pain and dermatological effects are hideous and restrictive to leading a full life.

Next, if you can donate please do so. There is only one known medicine to treat one of several types of Porphyrias in existence. There is information below.

All little background about why I am talking about C-Porph. The picture that is posted is a student who attended a school that I taught in. I believe he is in his mid 20’s by now. I remembered his name and I Googled it. I found an old “Go Fund Me” posted by his mom asking for funding for her son’s treatment .

Recollecting , there were days that this student came to school looking tired, shaking his hands (I believe to cope with his pain) and having rashes periodically.

He also played soccer and had to give that up. No matter how much he covered up the outbreak on his skin would show up and the pain would begin.

Here is my info on Porphoryias:

Cutaneous Porphyrias

Cutaneous porphyrias include forms of the disease that cause skin symptoms as a result of sensitivity to sunlight. These forms usually don't affect the nervous system. Porphyria cutanea tarda (PCT) is the most common type of all the porphyrias.

Sun exposure may cause:

• Sensitivity to the sun and sometimes artificial light, causing burning pain in the skin.

• Sudden painful skin redness and swelling.

• Blisters on exposed skin, usually the hands, arms and face.

• Fragile thin skin with changes in skin color.

• Itching.

• Too much hair growth in affected areas.

• Red or brown urine.

Erythropoietic protoporphyria (uh-rith-roe-poi-ET-ik pro-toe-por-FEAR-e-uh), also called EPP, is a rare type of cutaneous porphyria. It's the most common childhood porphyria. Sun or artificial light exposure quickly results in painful skin burning, irritation and swelling. Small bumps and blisters also appear. Repeated exposures can cause thick, leathery skin and scarring.

There is treatment available for one type of Cutaneous Porphyria. It is administered every two months.

As you can see very steep cost. Not sure of financial support.

Although rare you can see there are issues. Long term pain, dermatological effects, incomplete lifestyle, high cost of treatment if type is treatable. If you wish to donate please do so.

Greg

Hello there!

Did you know that worldwide, it takes about 15 years to diagnose Porphyria? It affects 1 in 50,000 worldwide. This holiday season, donate your best gift for research and decrease the ~15 years it can take to diagnose Porphyria.

The American Porphyria Foundation (APF) has supported the Porphyria community since 1983. We exist to improve the health and well-being of all individuals impacted by Porphyria. We maintain a relentless focus on education, advocacy, support services and research for the prevention, treatment, and cure of the Porphyrias.

Porphyria is a group of rare inherited or acquired disorders of certain enzymes in which an important part of hemoglobin, called heme, is not made properly. Heme is also found in myoglobin, a protein found in certain muscles. They manifest with either neurological complications or skin problems or occasionally both.

Backed by the preeminent porphyria doctors and partners, we have serviced over 100,000 people in our community in over 120 countries in 2022 alone. Join us in our mission for a world where patients are FREE from the pain and challenges of #porphyria.

Nothing is more validating than learning the painful symptoms you hid because of stigma are actually due to an ultra-rare disease. Your donation will provide clarity in the form of diagnosis to someone who has had years of unanswered questions, hiding pain, secret illness rituals and medical gaslighting.

The American Porphyria Foundation was incorporated in 1983 as a tax-exempt 501(c)(3) organization. All contributions, grants and bequests are tax deductible. Our most recent 990 tax forms are available from the office.

Our work is supported primarily through donor contributions. We do not receive or use government funds.

THANK YOU!