Back toUpdated on October 22, 2024
Dr. Jennifer Caudle offers tips on how to get the conversation started with your loved ones about your HAE diagnosis.
Transcript
Hi, I'm Dr. Jennifer Caudle, and I'm going to help you find the words when it comes to talking to the people in your life about hereditary angioedema, or HAE.
[MUSIC PLAYING] HAE can really disrupt your life.
As such, it can be helpful to talk with those you trust and explain what you're going through. But talking about your HAE can feel uncomfortable
and maybe even a little scary. If you're struggling to find the right words, here are a few ways to get the conversation started.
First, you want to let folks know what it is you're dealing with. You can tell them that HAE is a very rare genetic disorder that
results in temporary but extreme episodes of swelling. HAE is different for everyone, but typically, people
see swelling in the hands, feet, face, or even the stomach or throat, which can be life-threatening.
You should also let them know that HAE is not contagious in any way. HAE is a hereditary condition.
It's passed through families. Now, if you have HAE, your first-degree relatives-- that is, your parents, your siblings, your children--
should talk to their doctors and get screened for HAE too. After you've covered the basics, it can be helpful to let people know about how
the condition affects you. HAE is uncomfortable and can feel embarrassing. Swelling in your feet or hands can make certain activities
difficult. And swelling in your face can make social activities daunting. Let them know that, during an episode,
you may want to isolate yourself to feel more comfortable. And if you do want to be around people, let those folks know what they can
do to support you in advance. It's also important that they know what to do in case of an emergency. HAE can be life-threatening if your tongue or throat swells.
Let the people in your life know that is a possibility, and teach them how to administer any medicine you take for HAE
and help you seek immediate medical attention. It can also be helpful to talk to your employer about your condition as HIV episodes can
affect your ability to work. Letting them know in advance can help them better understand what to do when episodes occur and how they can best support you.
You know, I know it seems daunting. But telling the folks in your life about HAE can lead to better understanding and help
you get the support you need when you need it most. If you're struggling with HAE and the conversations around it, talk to your doctor, your therapist,
loved ones, wherever you find support. [MUSIC PLAYING]
