This column describes the author’s own experiences with several medicines. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I was 23 and in a relationship with my eventual husband, Daniel. At the time, we weren’t ready to have a baby,…

Acute intermittent porphyria (AIP) manifests in a variety of ways, but in China, the most common symptoms are abdominal pain and problems resulting from damage to the brain and spinal cord, a review study has found. Nearly all Chinese patients with AIP — about 95% — experienced abdominal pain,…

When it comes to treating porphyria symptoms, there are more options than prescription medication alone. Just about every patient I know who’s managed an active disease state for any length of time has a recipe of wellness-based and self-help practices to cope with pain and stress. Mine includes daily…

Porphyrias are a group of genetic disorders characterized by high levels of porphyrins in the blood and tissues. There are several types of porphyrias, each with different symptoms and disease progression. Patients with acute intermittent porphyria, variegate porphyria, and hereditary coproporphyria are…

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…

Although progress has been made, more research is needed to develop effective therapeutic options for cutaneous porphyria, researchers said in a recent editorial, highlighting the latest advancements in the understanding of the disease, as well as possible pharmacological and non-pharmacological treatments. The editorial, “Shedding light on…