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Showing posts from September, 2014

Jamberry Nails Fundraiser for Porphyria Awareness

The Porphyria Research Consortium: A Partnership Between the American Porphyria Foundation and Physician Researchers

This week we are publishing the article written by our Executive Director Desiree Lyon. The original can be found on the Academic Medicine Journal's website:
http://academicmedicineblog.org/the-porphyria-research-consortium-a-partnership-between-the-american-porphyria-foundation-and-physician-researchers/The Porphyria Research Consortium: A Partnership Between the American Porphyria Foundation and Physician ResearchersEditor's Note: For more on patient advocacy groups, like the Porphyria Research Consortium, check out our AM Last Page, entitled "Realizing the Potential of Patient Organizations in Translational Research-Delivering Treatments for Rare Diseases."By: Desiree Lyon Howe, executive director, American Porphyria FoundationThe American Porphyria Foundation (APF) has been instrumental in facilitating porphyria research for over thirty years. The porphyrias are a group of disorders caused by enzyme deficiencies in the heme biosynthetic pathway that affect the Cen…

No longer living in fear

By Rocco Falchetto Sometimes the pain takes hold of the psyche and then takes over your life completely. At such moments, I have often wished that my illness could somehow be more apparent to others. Sometimes when I am treated with condescension because the pain – which feels like boiling oil on my skin – is not visible, I think about people who are blind or paralyzed. Nobody doubts a person’s disability when they see them with a white stick or a wheelchair.
Rocco Falchetto can now enjoy being outside in the sunshine without worrying about his skin burning after a few moments’ exposure (Photo provided by the author) Thoughts like this are irrational – of course I am thankful that I don’t suffer from the additional problem of a visible disability. Despite this, the disease has a significant effect on my quality of life and it is hard to get away from the negative mindset – especially when doctors downplay the symptoms because they don't know what they are talking about or as a res…