My Story
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.
http://www.haabsrestaurant.com
Where will the money go?
Proceeds go to the US Hereditary Angioedema Association. “The HAEA is a non-profit patient advocacy organization dedicated to serving angioedema patients. The HAEA provides HAE patients and their families with a support network and a wide range of services including physician referrals, and individualized patient support. Their goal is to increase awareness of Hereditary Angioedema by providing patients and physicians with authoritative and readily accessible information. They are committed to advancing and conducting clinical research designed to improve the lives of HAE patients and ultimately a cure.” https://www.haea.org/
What is HAE?
Hereditary Angioedema (HAE) is a rare, debilitating and potentially fatal genetic disease resulting from a deficiency of a key plasma protein. Patients suffer from unpredictable attacks of swelling that involves the hands, feet, abdomen, face, and airway. Abdominal swelling involves excruciating pain and vomiting that can last up to 72 hours. Airway attacks constitute a major medical emergency that can lead to death by suffocation. Despite the availability of new medicines and progress made in HAE advocacy and education, preventable HAE-related deaths continue to occur, and many patients still suffer from disabling attacks. To find out more, check out www.haea.org
