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.
Safe self-injection practices are an essential part of managing HAE. With proper training and preparation, self-administering medication can help prevent or treat these attacks quickly and effectively at home.
Managing the high costs of HAE treatment can be challenging, even with insurance. Exploring financial planning strategies, coverage options, and assistance programs can help ease the burden.
An HAE emergency plan equips others to act fast during an attack, easing stress and improving safety. Tailor it for home, work, or school to ensure the right people have the info they need to respond quickly and effectively.
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.
At 17, Hollie Amadio began a nine-year search for answers before being diagnosed with hereditary angioedema. Now, she’s an advocate, fighting for faster diagnoses and greater awareness.
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.
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.
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 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.
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.
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.
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.
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.
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.
Danita LaShelle Jones wishes someone had provided her a list of things she should know after her daughter was diagnosed with HAE. To help others in the same situation, she has written her own HAE Top 10 List.
HAE attacks can't always be prevented, but learning what your triggers are and what symptoms you experience, as well what preventive therapies are available, can help you manage the disease.
One of the most common triggers of an HAE attack is stress, which can be from something physical or emotional. Stress management may include trying coping strategies, making lifestyle changes, and taking medications for HAE attack treatment.
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