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FIRAZYR is a medicine used to treat acute attacks of hereditary angioedema (HAE) in adults 18 years of age and older.
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HAE and Family

HAE & Intimacy: Challenges as a Caregiver

Published on December 10, 2014 in HAE and Family

I have learned over the years that “intimacy” can come in many forms.  When I think about “intimacy” in my relationship with my husband, who has HAE, two forms come to mind… emotional and physical.

Emotional: I often find myself repeating the phrase, “You don’t know what you don’t know.” As I’ve cared for my husband with HAE over the years, there were times when he withdrew from me, and it was hard for me to know why. I believe that other people caring for someone with HAE can possibly relate to this experience. Without properly communicating my thoughts and feelings to my loved one, my mind has been left to wonder, and I may assume that my loved one is no longer interested in me. I then start to withdraw, and it turns into a vicious circle of assumptions and guessing games. 

Having lived through this circle, I know, for me, COMMUNICATION IS THE KEY!  I know my husband is counting on me to be there for him. How can I meet that need if we have put a huge, invisible wall between us? One of us needs to take the lead and open up the lines of communication so we can work together and address any problems we are having.

Physical: Because HAE attacks can be unpredictable, intimacy can be difficult. That’s why I, once again, believe communication is the key! My husband and I need to be honest with each other about how we’re feeling so we can address problems as soon as they happen.

Sometimes, that means we have to bite the bullet and have that somewhat awkward conversation with his doctor about problems with our physical intimacy. Doctors are often used to these sorts of discussions, but I know this conversation can feel uncomfortable. When our intimacy is in danger, this is something worth talking about.

I encourage people caring for someone with HAE to say to themselves, “Why wouldn’t we be willing to put forth the same effort to address intimacy issues that we do in caring for other aspects of our loved one’s HAE?”

HAE can have many challenges, but intimacy doesn’t necessarily have to be one of them. Have you experienced problems in your relationship with someone with HAE? Leave a comment!

--Stacey

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What is FIRAZYR?

FIRAZYR is prescribed to treat acute HAE attacks in adults 18 years of age and older.

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