Managing HAE through the eyes of a caregiver
Danita LaShelle Jones, a mother to a daughter with hereditary angioedema, shares thoughtful and practical caregiving tips to help navigate the challenges of this rare disease.
Taking action with hereditary angioedema
Living with a chronic disease like hereditary angioedema (HAE) can sometimes make both the patient and caregiver feel like circumstances are beyond their control and that their lives are being dictated by the disease. However, there are strategies that can help you regain control over your life and your HAE, including becoming knowledgeable about your diagnosis, learning to identify your HAE triggers and symptoms and how to manage them, and what support and resources are out there for you.
Understanding what an angioedema attack feels like
Recognizing the signs of an angioedema attack, identifying potential triggers, and learning effective management strategies can help you feel more in control of your condition and overall well-being.
Day-to-day living with hereditary angioedema
HAE is challenging, but taking steps such as creating a treatment plan, figuring out your triggers, following your medication schedule, and boosting your mental health can help you be more in control of your day-to-day life.
HAE and emotional well-being: Finding support and resilience
Educating yourself about HAE, adopting self-care practices, and seeking support from healthcare providers and peer groups can help you improve your emotional well-being and feel more in control of your condition.
Angioedema and skin care: Navigating swelling and sensitive skin
Angioedema swelling can irritate your skin and even be painful. A dermatologist can help you manage the condition with skin care routines that protect your skin. Medications and lifestyle changes can also aid your skin in recovering faster from swelling.
Surprise or not? Bracing for the news we’d been led to expect
Despite a doctor suggesting the possibility, caregiver Danita LaShelle Jones wasn't ready for her daughter's hereditary angioedema diagnosis. It took time, but eventually she was able to accept their new reality.
Despite preventive treatment, HAE patients require on-demand care
Even with long-term preventive treatment, many people with hereditary angioedema still sometimes have swelling attacks that require on-demand treatment, a review study finds.
Next steps after an HAE diagnosis
Educating yourself about HAE, including who should be on your support team, what to look at in terms of finances, and where to find other support and resources, can you help you come to terms with an HAE diagnosis.
Beyond swelling: Other HAE symptoms you should know about
Although swelling is a primary HAE symptom, people with HAE may experience a range of other disease-related symptoms, which can accompany swelling attacks or even happen without swelling.
Treatment and management of HAE attacks
A number of therapies can help manage HAE swelling attacks, including those used as preventive treatment to reduce the risk of attacks, as well as on-demand or acute treatments to resolve attacks as they are happening.
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