My name is Anita Shaffer and I have Hereditary Angio Edema, Type 1. I was officially diagnosed at the age of 6 years old in 1977 by a doctor at the University of Michigan after many ER visits with severe abdominal and...
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My name is Anita Shaffer and I have Hereditary Angio Edema, Type 1. I was officially diagnosed at the age of 6 years old in 1977 by a doctor at the University of Michigan after many ER visits with severe abdominal and facial swelling.
I spent the first 35 years of my life seeing specialists, trying new drug therapies (with terrible side effects) and getting life saving intervention at my local emergency room as many as 2 times per month.
About 8 years ago, with the help of HAEA, I was able to find a new research study very near my home. After 3 years, this particular drug therapy was FDA approved and everything opened up to me. I was introduced to a non profit that has been able to help me keep access to my rescue medication by helping me find the right insurance and financially assist me with cost of my copay and deductibles. Since this time, several rescue therapies have been introduced and made available to people with this disease.
2015 was the first year I didn't have to visit the emergency room. Not once!!
I have lived with this disease my whole life and in many ways it has shaped my life and made me the person I am. I am very grateful to be here and so happy to have made it to a time where there are finally so many options to treat people, like myself, who live with HAE. Physician and general awareness is also so important and is improving everyday.
My next step is to give back and raise even more awareness. I hope you will join me in helping if you can.
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