Acute intermittent porphyria compensation claims

We help people who have been misdiagnosed or endured a lengthy delay in diagnosis when suffering from Acute Intermittent Porphyria (AIP) as a result of clinical negligence.

Unfortunately, misdiagnosis of Acute Intermittent Porphyria is common and is likely either due to lack of clinical investigation or clinical inexperience. Acute Intermittent Porphyria can be diagnosed by biochemical testing: a urine porphobilinogen (PBG) test during an acute attack, or by genetic testing: looking at the genes known to cause the acute porphyrias.

Find out if you have a claim and get the compensation you rightly deserve. A misdiagnosis of Acute Intermittent Porphyria can be life changing so contact one of our clinical negligence specialists if you feel you may have fallen victim as a result of a lack of care and understanding.

What is acute intermittent porphyria?

Acute Intermittent Porphyria commonly known as (AIP) is a genetic metabolic disorder that affects the production of an oxygen-binding prosthetic group of hemoglobin known as heme. The function of the prosthetic group of hemoglobin is to deliver oxygen to tissues around the body.  Acute Intermittent Porphyria is characterised by a deficiency of the enzyme porphobilinogen deaminase within heme. Only 10-15% of gene carriers have the clinical syndrome.

Misdiagnosis & delayed treatment

Acute Intermittent Porphyria, by its very nature, can be difficult to diagnose and is a rare and often elusive illness. However, this does not mean mistakes and misdiagnosis are not made. In fact, we have dealt with cases for our clients where Acute Intermittent Porphyria should have been diagnosed and treatment carried out much earlier.

So far there has been minimal teaching in the UK. A lack of familiarity with the disease has unsurprisingly led to continued delay in diagnosis and misdiagnosis resulting in delayed treatment.

Acute intermittent porphyria complications & symptoms

Almost always an attack starts with severe pain, most commonly in the abdomen, but can also be felt in the thighs and the back.

Common Symptoms & Complications:

  • Constipation
  • Nausea
  • Vomiting
  • Confusion
  • Difficulty recalling details of their attack
  • Depression
  • Agitation
  • Restlessness
  • Increased blood pressure
  • Increased pulse

Less Common Symptoms:

  • Muscular weakness
  • Convulsions
  • Paralysis

Attacks of  Porphyria usually last for no longer than two weeks and, as we have mentioned, it is very important to seek medical advice and testing as soon as possible so that a prompt diagnosis can be made.

Diagnosis & procedure

Acute Intermittent Porphyria can be diagnosed with a urine test (often at your local hospital) which assesses your levels of porphobilinogen. In order to identify the presence and/or levels of porphyria, blood stools and urine are tested in a laboratory that specialises in porphyria. Levels of porphyria will be high in patients with acute porphyria. Genetic testing can also locate the genes known to cause Acute Porphyrias.

It is important that these tests are carried out as soon as possible early on as accurate diagnosis may be difficult after initial recovery from an attack.

Pregnancy & acute intermittent porphyria

Pregnant women suffering from AIP symptoms are often misdiagnosed. There are particular risks associated with pregnancy and AIP. These include higher rates of miscarriage, hypertension, low birth weight and increased mortality rates.

How & when should I claim

Call for free advice today and we will find out if you have a potential claim. Our Clinical Negligence Solicitors will aim to investigate your matter, provide you with answers and get you the maximum compensation possible.

  • Have you received a lack of attention from your Doctor?
  • Were you ignored when making complaints about pain and symptoms that could easily be related to Acute Intermittent Porphyria?
  • Do you think you were misdiagnosed?
  • Were there delays in your treatment?
  • Do you feel that a delay in diagnosis led to avoidable harm to you or your child during your pregnancy?