Porphyria

pyrhyriaAccording to Mayo Clinic:

“Porphyria refers to a group of disorders that result from a buildup of natural chemicals that produce porphyrin in your body. Porphyrins are essential for the function of hemoglobin — a protein in your red blood cells that links to porphyrin, binds iron, and carries oxygen to your organs and tissue. High levels of porphyrins can cause significant problems.

Porphyria mainly affects your nervous system, skin and other organs. The signs and symptoms of porphyria can vary, depending on the specific type and severity. Porphyria is usually inherited — one or both parents pass along an abnormal gene to their child. But in some types of porphyria, environmental factors may trigger the development of symptoms.

Treatment depends on the type of porphyria you have. Although porphyria usually can’t be cured, certain lifestyle changes may help you manage it.”

Symptoms of Porphria:

Acute porphyrias

Acute porphyrias include forms of the disease that typically cause nervous system symptoms, which appear quickly and can be life-threatening. Acute porphyria attacks are rare before puberty and after menopause in women. Symptoms may last one to two weeks and usually improve slowly after the attack.

Possible signs and symptoms of acute porphyria include:

  • Severe abdominal pain
  • Swelling of the abdomen (abdominal distention)
  • Pain in your chest, legs or back
  • Constipation or diarrhea
  • Vomiting
  • Insomnia
  • Heartbeat you can feel (palpitations)
  • High blood pressure
  • Anxiety or restlessness
  • Seizures
  • Mental changes, such as confusion, hallucinations, disorientation or paranoia
  • Breathing problems
  • Muscle pain, tingling, numbness, weakness or paralysis
  • Red or brown urine

Cutaneous porphyrias

Cutaneous porphyrias include forms of the disease that cause skin symptoms as a result of oversensitivity to sunlight, but these forms don’t usually affect your nervous system. Attacks may last for several days. With some forms, signs and symptoms may start during infancy or childhood.

As a result of sun exposure, you may experience:

  • Sensitivity to the sun and sometimes artificial light, causing burning pain
  • Sudden painful skin redness (erythema) and swelling (edema)
  • Blisters that take weeks to heal
  • Itching
  • Fragile skin
  • Scars or skin color changes from healing blisters
  • Increased hair growth
  • Red or brown urine

Testing

As with most things Lyme related the test results are not always very accurate with Porphyria. It is important to find a doctor knowledgable about this condition.

Testing for Porphyria

Learn More on These Websites

American Porphyria Foundation(link is external)

National Digestive Diseases Information Clearinghouse(link is external)

National Human Genome Research Institute

Articles regarding Porphyria

Chlamydia pneumonaie and porphyria by Dr Buhner

Nutritional Advice for Persons with Porphyria

 

Book about Porphyria

PORPHYRIA:The Ultimate Cause of Common, Chronic, & Environmental Illnesses, 2nd Ed.





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