There is treatment for this diseasePublished 10:16am Monday, April 22, 2013
Have you ever heard of a disease called porphyria? It is a rare blood disease that makes it painful for sufferers to be in the sun. I know about this disease because our dear friend Monica Fleegel has it. Monica cannot be in direct sunlight for more than a few minutes without experiencing extreme pain. She cannot experience life’s simple pleasures such as taking a walk, swimming and biking with her family.
The good news is that there was a drug developed to lessen the painful effects of the sun. Monica was put on this drug as a part of a clinical trial for six months. The results were amazing! For the first time in her life, she was able to go on hikes in the mountains with friends and even walk around the lake without pain. Bad news is that the FDA hasn’t approved the drug yet, even though the drug was successful.
Last weekend there was a small fundraiser to support pushing the drug through the FDA with letters and donations. If you are interested in learning more or supporting our cause, please go to the American Porphyria Foundation website: www.porphyriafoundation.com or call toll free 866-273-3635.