Navigating HAE:
A guide to living, learning, and thriving
Whether you’re a patient or caregiver, managing hereditary angioedema (HAE) requires resilience and determination.
Education can help you understand your diagnosis and find ways to manage it daily, helping you to live your best life.
Watch: Mastering the science of HAE
Tattoos are a meaningful form of self-expression, but for people with HAE, they may also bring unique health concerns. Because tattooing involves repeated skin trauma, understanding possible risks and precautions is key before deciding whether body art is safe with HAE.
Living with hereditary angioedema can bring sudden swelling episodes that disrupt daily life. A trained service dog may offer support, safety, and greater independence when you need it most.
Managing HAE takes more than medical care. Connecting with the community, logging symptoms, advocating for care, and focusing on life beyond the diagnosis can help make the journey more manageable.
Pool days with HAE take a little extra planning. From managing heat and hydration to choosing gentle swimwear and packing meds, these six tips can help you stay safe and enjoy the sun.
In hereditary angioedema, gastrointestinal swelling episodes can lead to symptoms such as abdominal discomfort, nausea, vomiting, and diarrhea, often requiring timely recognition and supportive care.
Exercise can help ease the stress associated with hereditary angioedema, with low-impact activities like yoga, swimming, and gentle walking providing essential health benefits without triggering symptoms.
By looking after your own physical and mental health, you will be better able to handle the demands of being an HAE caregiver and provide the best support to your loved one.
Test your understanding of hereditary angioedema (HAE) with this quick quiz and see how well you grasp the basics of HAE, including its types, symptoms, and treatment options.
Good communication allows your doctor to better understand how your condition is affecting you so they can create a personal HAE treatment plan that adapts to your changing needs.
Hereditary angioedema is caused by mutations in various genes that lead to an overproduction of a protein called bradykinin. These mutations are usually, but not always, passed down from an HAE-affected parent to their child.
Coagulation factor XII, or FXII, is a blood protein that plays a role in the body’s inflammatory signaling cascade called the kallikrein-kinin pathway, which is ultimately responsible for HAE swelling attacks.
Remembering to take your medication can be a challenge when you're also trying to balance other daily activities and tasks. Danita LaShelle Jones has some tips on how she has managed medications for her daughter with HAE.
In general, women with HAE may experience more frequent and severe swelling attacks than men. Hormonal changes throughout life can also mean HAE symptoms fluctuate significantly for female patients.
Traveling with hereditary angioedema involves some extra planning, including knowing where to get help in case of an emergency and making a checklist of what to bring with you for managing symptoms.
Connecting with a community of people who understand what it's like to live with hereditary angioedema can provide you with encouragement, empathy, and guidance, as well as ways to advocate for yourself and others.
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