"After 40 years of suffering tremendous pain and just having to deal with it, I am now enjoying each and every day."

Sally, living with Hereditary Angiodema

“My name is Sally and I have Hereditary Angioedema.  When someone asks me ‘what is having HAE like?’  I respond: ‘before therapy or after? As they are two very different lives.’

"Prior to therapy, I suffered severe HAE attacks each week.  My attacks would involve extremity swelling and gut wrenching abdominal pain with vomiting lasting 8-12 hours.  At times, my attacks would include a disfigured, swollen face taking three to four days to look ‘human’ again.  At least twice a year, I would have laryngeal attacks which effected my swallowing. Laryngeal swelling was extremely stressful as the possibility of airway obstruction leading to death was a reality.  At the ER, there was little doctors could do except keep an eye on my airway.  Anti-histamines and allergic type medication do not help HAE swelling. HAE had control over every aspect of my life.  School, work, plans with family and friends, travel, wedding, birthdays.  Almost any type of plan was drastically affected. 

"Life since beginning my HAE therapy in 2009 is like night and day.  I am now well-managed and live as a normal person.  Rather than having to infuse my medication twice a week, I often forget I even have HAE. Today, I can make plans with family and friends without counting out the days on a calendar to see if I am due to be sick.” My current therapy is a plasma-derived C1-esterase inhibitor product which I infuse to prevent HAE attacks.  For me, it has proven to be a lifesaving and life-giving therapy. I work full time, am able to keep plans with family and friends, exercise, undergo dental procedures without worry, travel, and basically lead a full, happy life."

Submit your own story!

We want to hear from you! Every person living with a disease that is treatable with plasma protein therapies has a unique story to tell. If you are impacted by one of these diseases, please consider sharing your story. Share your story and a photo in the e-form to show your support of ”How Is Your Day?” We will review your submission and share it on the ”How Is Your Day?” website and via our Facebook and Twitter channels. Together, we can make a difference.
You have 9999 characters left
By clicking “Submit your story” below, you agree to allow your photo and words to be used as part of the “How Is Your Day?” initiative. We reserve the right to modify your words for grammar, clarity, and space constraints.