Have your family tested for HAE

it is important!

If you have been diagnosed with HAE, it is important to talk with family members about being tested.

HAE is a genetic condition. If one parent has HAE there is a 50% chance that his or her child will have it, too.
HAE is an autosomal dominant disease, which means one copy of the altered gene in each cell is sufficient to cause the disease.  So HAE is usually inherited from a parent, however, about 25% of patients develop HAE as a result of a spontaneous (non-inherited) genetic mutation. Children of these HAE patients can also inherit the disease.  There are no skipped generations and no “carriers” of HAE.

Testing is the first step
HAE is a condition that, with support and treatment, can be successfully managed.  You can achieve lifelong health and live an active life.  Testing  is the first step.

Why is it important to reach out to my family about testing?

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    HAE that goes undiagnosed and unmanaged can have serious consequences

    About 50% of all HAE patients experience at least one HAE throat (laryngeal) attack during their lifetime.  This type of HAE attack is potentially life-threatening because of the risk of suffocation.  Testing can help your family members be prepared in case of such an HAE emergency.

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    Diagnosing HAE is easy

    It involves a simple blood test that will check concentrations of the protein C1-esterase inhibitor (C1- esterase inhibitor (C1-INH) is a protein in the body) and the complement factor C4 as well as C1-INH activity.  And having a positive diagnosis improves the likelihood of surviving a potentially fatal attack.

     

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    Remember, HAE is variable – even within families

    It involves a simple blood test that will check concentrations of the protein C1-esterase inhibitor (C1- esterase inhibitor (C1-INH) is a protein in the body) and the complement factor C4 as well as C1-INH activity.  And having a positive diagnosis improves the likelihood of surviving a potentially fatal attack.

     

Being aware of the condition is the first step to taking control.

Before talking with family members about HAE testing, be sure you are well-versed in the facts.  Read the comprehensive information at www.haea.org or speak to your HAE doctor about how you can speak to your family members.  Being fully informed will also help you as you consider talking to your own children about HAE.

Some people will find the decision to be tested for HAE an easy one to make and others may have on-going concerns.  You or your family member must be sure before proceeding with the test. If taking the test results in your family member/s being diagnosed with HAE, it is important to remember that there is support available from other  HAE patients, including the US HAEA Patient Advocates Team.

 

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