OnePath® is Shire’s personalized product support service. For me, I look at OnePath as being similar to a GPS: My Case Manager is there to help me navigate certain aspects of my HAE treatment journey, and my treatment plan that my physician developed with me is the map we’re following.
What frustrates me the most about my husband’s hereditary angioedema (HAE) is the fact that it is so unpredictable. Just when I think I have things figured out, I am faced with reality… I don’t! While I sometimes get frustrated that I can’t predict everything when it comes to my husband’s HAE, I still do what I can to keep myself as aware of his HAE triggers as possible.
I’m all alone. I’m weird! My doctor has told me I have this disorder with a crazy-sounding name! Nobody I know has ever even heard of it. Before I got involved in the Hereditary Angioedema Association (HAEA), that’s how I sometimes felt. But not only do some HAEA staff members have HAE, the organization brings together thousands of people who share the disease. Now, I don’t feel alone—or like I’m weird—anymore!
At times, life with hereditary angioedema (HAE) can feel exceptionally challenging and lonely. Depending on where someone with HAE lives, there may not be too many “swell” friends (as I like to call them) around, and I know I’ve sometimes felt like the only person on the planet having these experiences.
One of the hardest things for me has been dealing with denial about my hereditary angioedema (HAE). Denial is an easy path to run on, but with it comes loneliness and regret. Regret that, because I was in denial about my HAE and wanted to hide my symptoms, I missed holidays, work, special dates, and gatherings with friends and family.