Most of the people in my family have HAE attacks at the abdomen or their arms and legs, and talk about the attacks almost as inconvenient interruptions to their daily activities.
Many in my family don’t seem to acknowledge that HAE attacks are unpredictable, and, for someone with HAE, a potentially life-threatening laryngeal (throat) attack could happen even if they never had one before. In my family, having swelling of a hand, arm, shoulder, back, or even an abdominal attack are all things that can be expected to happen, even though HAE attacks are unpredictable.
They tend to just tough it out and go on with life.
If they have an attack, most of my family members will just shrug their shoulders, their facial expressions making it seem like it’s really no big deal.
But yes, it can be a big deal.
When my hands are so swollen that I cannot grip a pen, or my feet are so swollen that I’m unable to get my shoes on, it’s a very big deal. I can’t go about my daily life, and it’s very hard to get to work.
Many of my family members say these skin attacks don’t need to be treated, because they don’t consider them life-threatening. While it may be true that they’re different from laryngeal attacks—and you should always go to the nearest hospital emergency room if you have an HAE attack of the throat—these skin attacks can still be serious, and you always have to wonder and be concerned if that attack will progress and where the attack might move.
I’ve been trying to tell my family that there are options in how to approach their HAE attacks. When HAE is brought up as a topic of conversation, I tell my family about available current treatments for acute attacks and encourage them to talk to their doctors.
I’m also sure to mention any Shire programs that are coming to our area in the near future. I know that I’ve appreciated getting involved in educational programs like the Shire Patient and Caregiver Ambassador Programs and Ambassador Health Programs. The family members who’ve attended the programs with me told me later that they have some different thoughts about managing life with HAE after listening to others outside the family and they’ve come away more knowledgeable.
In the end, everyone is different, and I encourage my family members, together with their doctors, to develop their own HAE management plans and make their own personal treatment decisions.
I feel a sense of accomplishment because I’ve been persistent and patient when talking to my family members. And I’m satisfied knowing that I’m at least trying to help them find out more about HAE and be more proactive.
Do you have experience trying to talk to your family about HAE? I’d love to hear about it, so feel free to make a comment below!