Amber’s Battle with Porphyria

This fundraiser is to help one of our Porphyria warriors who is battling this horrible disease Porphyria . Amber suffers from CEP one of the rarest Porphyrias. For those of you who does not know what this is. Here is a quick overview. 

In most cases, CEP symptoms usually begin soon after birth or in early childhood. The most crucial symptoms that go hand-in-hand with this disorder is skin photosensitivity to the sun that lead to blistering, severe scarring, as well as loss of facial features and possible loss of fingers. Some other common symptoms of CEP include increased hair growth, brownish-colored teeth, enlarged spleen, bone fragility due to expansion of the bone marrow, vitamin shortage, and shortened life-span of red blood cells.

Amber has had to get blood transfusions frequently, and lots of trips to the Emergency room and the doctors. Most recently she has a bad infection in her pointer finger. That finger is extremely swollen and the infection has went to the bone. She is currently in the hospital and they are discussing amputating that finger. Emergency room visits and doctor visits for transfusions is now just a normal thing for her. Nobody can understand what it’s like to live with this disease every day. It  physically and emotionally takes a huge toll on a person. If you can help out in any kind of way, even if it’s only a few bucks, words of encouragement, or prayers would be highly appreciative! Thank you.