The pain is across all of your body
and just resonates everywhere.
Some people describe it as like fire
that is just burning all over their body
and that they just
can’t do anything to make it better.
It’s acute hepatic porphyria.
TWO OF ME: LIVING WITH PORPHYRIA
A story of human strength, perseverance and survival, chronicling the lives of seven people around the world living with AHP.Watch Documentary
COULD IT BE ACUTE HEPATIC PORPHYRIA (AHP)?
Porphyria comprises a family of eight inherited metabolic disorders of the heme biosynthesis,1 which have been subdivided into hepatic and erythropoietic forms, according to the site of expression of the genetic defect: the liver or bone marrow, respectively.2
Acute Hepatic Porphyria typically causes episodes of severe unexplained abdominal pain together with one or more of the following symptoms: limb, back, or chest pain, nausea, vomiting, confusion, anxiety, seizures, weak limbs, constipation, diarrhoea, or dark or reddish urine.3-6
In some AHP subtypes, cutaneous symptoms may be present.7
The experience may have sent you to the doctor or hospital repeatedly over the years, often resulting in different suspected diagnoses.3,4,8 If this sounds at all familiar, it may be a disease called acute hepatic porphyria (AHP), which consists of 4 types of porphyria.3
AHP is a disease that people may experience differently. It has a wide array of symptoms that often mimic those of other diseases, making diagnosis difficult. It can even cause potentially life-threatening attacks.3,4
The good news is that there is support available and there are ways to test for AHP. This website provides resources and information on the signs and symptoms of AHP, living with AHP, and ways AHP is diagnosed so you can start a conversation with your doctor.
your doctor about tests that can confirm a diagnosis.