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If you are living with porphyria, shoshin may be able to change the way in which you view your life and your disease. What is shoshin? Shoshin is an idea that comes from Zen Buddhism and means “beginner’s mind.” It is a concept of keeping your mind open…
Regular dental checkups are an important part of your health and wellness. If you have porphyria, however, checkups may need to be more frequent than usual and certain risks can accompany a dental visit. Here is information about the importance of visiting your dentist, and…
People with rare diseases may well be concerned about the safety of vaccines, especially those newly developed against COVID-19. Here is some information about vaccines, and risks associated with their use in people with porphyria. What is Porphyria? Porphyria is a group of diseases related to the production of heme.
Living with a rare and chronic disease such as porphyria, with its multitude of symptoms, can make it hard to stay motivated. Here are some tips that may inspire you to keep going on those days when motivation is hard to come by. Ask for support Sometimes, daily life…
If you or a family member has a rare disease such as porphyria, it may help to plug into health advocacy efforts. These generally promote health and access to care at individual and community levels. Here is more information about advocacy and ways in which it could help you. About…
It is important to understand what are the potential triggers of acute porphyria attacks. That way, you may be better able to avoid them if you have porphyria. In addition to genetic risks, environmental factors may trigger the development of porphyria and these painful attacks. What is porphyria?…
People with certain types of porphyria may have problems with their liver. The following information may help you understand the link between porphyria and liver damage, the problems the disease can cause, and how doctors may treat them. How porphyria involves the liver Porphyria is a group of related genetic…
People with porphyria often have trouble sleeping. Because a good night’s sleep is vital to physical and mental health, as well as your quality of life, you may benefit from practicing sleep hygiene. What is porphyria? Porphyria refers to a group of disorders in which porphyrins — molecules normally used…
The symptoms of chronic diseases such as porphyria can present real challenges in your everyday life. One way to help cope is through a practice called mindfulness. The following will provide more information on how to practice this technique. What is porphyria? Porphyria refers to a group of disorders in…
An estimated 10 to 20% of people with acute porphyria experience seizures, which can be life-changing and lead to many complications. What is porphyria? Porphyria is a group of genetic disorders that all result from the dysfunction of the metabolic pathway that produces heme. Heme is an integral part…
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