Hi, my name is Lois. I'm 63 years old and I have a rare genetic condition called Hereditary Angioedema (HAE). I'm sharing my personal story to commemorate hae day :-), the international day of awareness for the condition.
I was officially diagnosed by blood work in 1973, however, I had been having attacks since I was four years old. My father died from an HAE attack at the age of 26 and my grandfather at 34, so I have a family history where some do not. Unfortunately, when I was diagnosed there were NO treatments for HAE so my health journey growing up was not an easy one. I was constantly sick or swollen and missed many family and school events. I took many trips to the Emergency Room (ER), only to be kept for observation as the doctors were at a loss as to how to treat me. I was fortunate to have been invited to the National Institutes of Health (NIH) in the late 70's and was seen by Dr. Michael Frank. I am grateful for the research done over the years that provided more answers in recognizing HAE, and led to new and modern treatments!
For me, the biggest challenge was the uncertainty of when an attack would happen or how severe it would become. Since there were no treatments for HAE early in my life, it was hard on my mom who watched my dad die in front of her. I admit I hid many of my attacks from her to try and soften the blow and help with her anxiety. Even when androgens and other steroids were found to work "somewhat" for HAE, they included their own challenges. Being unable to become pregnant while on them, and too sick to become pregnant without them, was a vicious circle.
Since the approval of the first HAE therapies and the subsequent approvals for newer medicines, my life has come around 180 degrees. I no longer have to worry about the next attack as I am on preventive therapy. If I do have a breakthrough attack, knowing I can treat at the very first sign of an attack and stop it in its tracks, has given me back my life. I am able to work full time as well as travel all over the world (prior to the pandemic) without any worry of an attack. I just take my medications and supplies along with me and have fun without having to research where the closest ER is!
Without advocacy and awareness, we would still be floundering for treatments and a better quality of life. Due to shared knowledge, we have assisted many of our fellow people with HAE in achieving better health. Awareness is key in learning that HAE does NOT have to stop us from doing what we love!
From before there was even an official HAEA, this organization has been here for me by offering support and assistance along my journey. The HAEA has helped me connect with clinical trial sites since 2006. I was able to enroll in a few clinical trials over the years and by participating in those clinical trials, I feel I have also contributed to improving the lives of other people with HAE. They now also have access to new and modern FDA-approved HAE medications which have been proven to work for HAE. Many times, my local doctors may have questions about how my HAE would affect surgeries or other medical conditions. I could turn to the HAEA with these questions for a peer-to-peer consultation between their Medical Advisory Board (MAB) and my local doctors. When I had my heart attack in 2004, the first person Kendall reached out to was Tony (US HAEA President and CEO) and other HAEA staff for guidance regarding medications and other HAE-related questions. Having the HAEA and the US HAEA Medical Advisory Board (MAB) at my fingertips has helped me in so many ways.
For me, hae day :-) is a special day to highlight HAE and share information with everyone who may come into contact with a person with HAE. It also means being able to share our stories of success with modern medicines and how we can now live life to the fullest!