My name is Sarah Lee and I have Porphyria. Most who are near and dear to me know that I have battled with this disease since I was diagnosed in 1997. I have Hereditary Coproporphyria. It is a rare disease that most doctors are not educated about it. From looking at me I look “normal” but the battle going on inside of me everyday is anything but normal.
People who have porphyrias can have are range of problems with their nervous systems, resulting in abdominal pain, vomiting, acute neuropathy, muscle weakness, seizures, depression, and anxiety. Cardiac arrhythmias and tachycardia (high heart rate) may develop. Pain can be severe.
I suffer from acute attacks and sun sensitivity. We are a long way from having an effective treatment let alone a cure. Since it’s a rare disease, there’s not much funding for research and it is up to those suffering from Porphyria to be their own advocates and educate as many people as possible.
The more people who know about it the closer we are to getting funding for research from the government and getting medications developed and approved by the FDA.
The American Porphyria Foundation has given me so much support. I am so thankful to have them in my life. I am every happy to be a part of helping people with other rare diseases find HOPE too.