Meet Marsha, a Shire Patient Ambassador
My name's Marsha. I’m from California. I’m the mother of three and I have HAE. I was sick with HAE for about 20 years before I received a diagnosis, so there were many twists and turns. I didn’t know what was wrong with me, I tried all kinds of different things, but nothing helped. I couldn’t plan anything; I couldn’t predict anything, so I really needed answers. When I first received my diagnosis, I was relieved to find out that my condition had an actual name and that I wasn’t crazy. But I was pretty scared when he told me it was a potentially life-threatening disease. That was before the internet, so I… There was very little information available. I couldn’t find out anything about it. Living with HAE can be very challenging because it is so unpredictable. It’s important to be prepared as well as you can. It’s important to have resources in place, people you can call, people that’ll understand. I think it’s really important when you’re raising a family and you have HAE and other family members have HAE, to discuss it out in the open and it’s nothing to be ashamed of. It shouldn’t be a secret. My HAE journey has taught me patience and persistence. When I’ve pushed through, things have worked out in ways I never imagined.