Exposure to sunlight can affect people with cutaneous porphyrias (largely marked by fragility of sun-exposed skin), and two types of acute porphyrias — variegate porphyria, or hereditary coproporphyria. The severity of the reaction, however, differs among patients. Why is sun exposure a problem? In some kinds of…
Diseases that are characterized by high levels of porphyrins in the blood, urine, and tissues, are grouped under the name porphyrias. It’s important to discuss with your doctor the risks of pregnancy with porphyria, and any potential harm that medications you are taking might cause the fetus. Can patients…
Porphyria refers to a group of rare diseases characterized by high levels of porphyrins in the blood, urine, and tissues. What are porphyrins? Porphyrins are ring-shaped molecules that undergo a series of chemical changes to produce heme — an important component of the protein hemoglobin, which…
There’s currently no cure for porphyria, and only a few therapy options are available to treat the symptoms of this group of rare inherited blood disorders. None of them address the cause of the underlying disease. Participating in clinical trials is a way to help researchers develop…
Porphyria is a rare disease that affects fewer than 200,000 people in the U.S. Many physicians are, therefore, unfamiliar with it and its treatment. This could be a major problem, particularly in a medical emergency. If you have the disease, working with your primary doctor to develop and…
If you have porphyria, you likely may regularly have trouble getting a good night’s sleep. There are ways to help remedy that. What is porphyria? Porphyria refers to a group of disorders in which affected individuals cannot make hemoglobin, the protein that binds oxygen in…
If you have acute porphyria, it’s important to know that diet and nutrition may help to ease your symptoms. What is porphyria? Porphyria refers to a group of disorders in which affected individuals cannot make hemoglobin, the protein that binds oxygen in red blood cells. Due to…
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