Chronic Lyme Disease Summit 2

Porphyria Awareness Week

National Porphyria Awareness Week to Begin March 29th

TO RAISE AWARENESS OF A RARE, DEVASTATING AND OFTEN UNDIAGNOSED DISEASE THAT AFFECTS THOUSANDS OF AMERICANS, THE WEEK OF MARCH 29TH HAS BEEN DECLARED NATIONAL PORPHYRIA AWARENESS WEEK.

SYMPTOMS SUCH AS ABDOMINAL PAIN, RAPID HEART BEAT AND PAIN IN THE BACK OR LIMBS MAY NOT HAVE A SIMPLE CAUSE. THEY COULD BE A SIGN OF A RARE AND COMPLEX DISEASE THAT AFFECTS THOUSANDS OF AMERICANS.

TO RAISE AWARENESS OF THIS DEVASTATING DISEASE, THE WEEK OF MARCH 29 HAS BEEN DECLARED NATIONAL PORPHYRIA AWARENESS WEEK. PORPHYRIA SUFFERER AND FOUNDER OF THE AMERICAN PORPHYRIA FOUNDATION, DESIREE LYON HOWE:

“It felt like a thousand flaming swords were stabbing my abdomen. I was undiagnosed and not properly treated for 10 years. Fortunately, there’s hope. I take Panhematin® to manage my porphyria and tests are available to accurately diagnosis the disease. No one should have to suffer like I did.”

PORPHYRIA IS CHALLENGING TO DIAGNOSE BECAUSE THE DISORDER HAS A VARIETY OF SYMPTOMS THAT CAN MIMIC OTHER CONDITIONS. WHEN UNDIAGNOSED AND UNTREATED, THE DISEASE CAN SEVERELY IMPACT A PATIENT’S QUALITY OF LIFE AND MAY CAUSE LONG-TERM OR PERMANENT NEUROLOGICAL DAMAGE. FOR MORE INFORMATION ON PORPHYRIA, VISIT PORPHYRIAFOUNDATION-DOT-COM, THAT’S P-O-R-P-H-Y-R-I-A FOUNDATION-DOT-COM

Comments

  1. I have Porphyria, and want to thank you for helping to create awareness.

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