HAE can place a huge stressful burden on you and your family due to its unpredictability and its painful, potentially life-threatening symptoms.1,2 This burden may impact you not only when you are actually experiencing an attack, but also every day in between – even when you are not experiencing HAE attack symptoms.3
Depending on where on your body it occurs, how painful, debilitating and disfiguring it may be, and how long it lasts, an HAE attack can cause significant disruption to your daily life. In fact, 38% of patients reported at least one Emergency Room visit and ~20% required hospitalization or an urgent care visit due to HAE during the past year.2
Attacks can also be extremely painful, particularly if affecting the gut. In one study:
As such, HAE attacks can cause you to take time off from work/school, which can lead to a loss of educational and career opportunities.2
In a multinational survey, patients with HAE reported:2
Absence from work for 8% of the prior week
A 24% loss in work productivity
You may find that, even if you experience very few attacks, HAE severely impacts your quality of life, due to the unpredictability of the attacks and the constant fear that one may occur at any time.
You might also find yourself making lifestyle changes to avoid attack triggers, which can interfere with your daily activities and overall quality of life.2,3
In fact, in addition to missed time from work, around half of patients with HAE reported in a study that their disease impacted their career and/or educational progression. In one study, patients believed that HAE:
It is also common to experience psychological effects associated with living with HAE.3 One study found that:2
For patients with HAE, a potentially vicious cycle can be created by an attack:6,7
As well as physical and psychological effects, HAE may impact your social activities and relationships such as your ability to attend social/family events, being able to participate in certain sports and hindering travel opportunities.8
Family and caregivers play an important role in managing HAE-related care and can be involved with:
One study in the United States of America found that 84% of caregivers of patients with rare diseases perform medical- or nursing-related tasks. As such, caregivers may also experience various psychosocial burdens related to HAE, including missing work or school days, dealing with unpleasant or inconvenient infusions or injections, and watching a loved one suffer.9
Data suggest that female patients with HAE may experience more frequent and more severe HAE symptoms than male patients.10
Throughout a patient’s life, there are special considerations that women with HAE and their treating physicians should discuss and be aware of.
For most patients with HAE, attacks start in childhood, although some present with their first attacks later during adolescence. In female patients, around 50% of first attacks occur before the age of 12 and 90% of first attacks occur by the age of 23.1 A known trigger of HAE attacks is changes in hormone levels. Consequently, during puberty and adolescence, the frequency and the severity of attacks may be affected and increase.1,11
In female adolescents and women with HAE, the use of some contraceptives may affect hormone levels and can alter the frequency and the severity of attacks, as can hormonal changes and hormone-replacement therapy during the menopause.11 Therefore, it important to inform your physician if you are using any hormonal contraceptives. You should continue to discuss your therapeutic options and update your personalised management plan regularly with your physician to reflect hormonal changes throughout your life.
Fertility is not impacted in women who have been diagnosed with HAE.10 If you wish to start a family, you should speak with your HAE specialist regarding conception planning.
Your HAE specialist can address any concerns or preferences you may have regarding conception and your HAE.12
During pregnancy, and if you are breastfeeding, you should also work closely with your HAE-treating doctor and obstetrics/gynaecology healthcare professional to create an appropriate HAE management plan.
The plan should be discussed regularly and adapted, as needed, at both prenatal and postnatal stages, due to potential changes in disease course and the treatment options that are available during these stages.12
Hear Paul’s journey with HAE, his advice for newly diagnosed patients, and his hopes for the future of HAE management
Discover how HAE influences daily life through the voices of those who live with it.
