–Sue, living with AHP

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.

 
−Sue, living with AHP
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.
Uncover the disease >

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.

If you suspect you are having symptoms of AHP, it is important to talk with your doctor about tests that can confirm a diagnosis.

References: 1. Puy H, et al. Lancet. 2010;375:924-37. 2. Edel Y, et al. Rambam Maimonides Med J. 2018 Apr 19;9(2). doi: 10.5041/RMMJ.10333. 3. Anderson KE et al. Ann Intern Med. 2005 Mar 15;142(6):439-50. 4. Balwani M et al. Hepatology. 2017 Oct;66(4):1314-1322. 5. Pischik E & Kauppinen R. Appl Clin Genet. 2015 Sep 1;8:201-14. 6. Harper P & Sardh E. Expert Opinion on Orphan Drugs, 2:4, 349-368. 7. Whatley SD, Badminton MN. Ann Clin Biochem. 2013;50:204-16. 8. Bissell DM & Wang B. J Clin Transl Hepatol. 2015 Mar;3(1):17-26.

AS1-CEMEA-00135 September 2020