Hidden Struggles of HAE: Managing Physical and Psychological Challenges and Long-Term Care in Older Adults

Sudden swelling under the skin might be due to   a rare genetic disorder causing unpredictable swelling in various body parts, including the skin, airways, and gastrointestinal tract. 

The symptoms often start in childhood or adolescence, but HAE attacks can occur throughout life, creating unique challenges for older adults and those in long-term care facilities.

HAE is caused by a genetic defect affecting the C1 inhibitor protein in the blood, which is crucial in regulating the body's immune system and inflammatory response. There are two main types: HAE type 1, characterized by a deficiency of the C1 inhibitor protein, and HAE type 2, where the protein is present but dysfunctional.

Symptoms and Diagnosis of HAE 

Diagnosing HAE is challenging due to its rarity, non-specific symptoms, and delayed onset. Symptoms like swelling can mimic other conditions, making it difficult for healthcare professionals to accurately diagnose HAE, often leading to significant delays.

Common symptoms of HAE include swelling, extreme fatigue, muscle aches, tingling, headaches, abdominal pain, hoarseness, and mood changes. Swelling in the throat is particularly dangerous as it can cut off airways and be life-threatening. 

Triggers for HAE attacks include stress, infections, hormonal changes, physical trauma, certain medications, foods, weather changes, and allergies.

HAE can significantly impact mental health, causing anxiety, stress, depression, and mood swings due to the uncertainty of attacks and constant pain. Social activities and relationships might suffer, leading to feelings of isolation. Seeking support from healthcare professionals and connecting with others facing similar challenges can help manage these psychological effects.

How to Manage HAE

Managing HAE involves avoiding triggers, regular monitoring, and early treatment of symptoms. For people suffering from Hereditary Angioedema, it is crucial to deflate HAE and manage it. Managing HAE involves various strategies. Avoiding triggers, like stress and certain medications, is vital. Regular monitoring and early treatment of symptoms can help prevent severe attacks. 

Medications such as C1 inhibitor replacement therapy can reduce the frequency and severity of attacks. Developing an emergency action plan with healthcare providers, maintaining a healthy lifestyle, joining support groups, and educating family and friends about HAE is crucial for effective management.

HAE in Older Adults and Long-Term Care

Older adults with HAE face increased risks and considerations, especially regarding long-term care. Studies suggest that older adults with HAE may experience more frequent and severe swelling episodes compared to younger individuals. Symptoms like swelling and fatigue often overlap with other age-related conditions, complicating diagnosis and treatment. 

Introducing HAE medications into existing regimens requires careful monitoring to avoid negative interactions. Physical limitations due to aging and cognitive decline can also present challenges in managing HAE.

Optimizing care for older adults with HAE involves educating healthcare staff about HAE symptoms and treatment protocols, developing individualized care plans, collaborating with families, and having an emergency preparedness plan. 

Chronic inflammation associated with HAE can increase the risk of heart disease and stroke, and frequent swelling episodes can mimic arthritis, limiting mobility and physical activity.

An additional challenge for older adults is polypharmacy. Older adults with HAE may already be taking medications for various age-related health issues. Introducing HAE medications requires careful monitoring by healthcare providers to avoid potential drug interactions and ensure optimal management of all conditions.

Finding Qualified Caregivers for Those with HAE

Finding caregivers and long-term care facilities familiar with HAE is essential. Quality care ensures that caregivers understand the condition, its relation to other health and aging needs, and how to provide appropriate care. 

The LTC NEWS Caregiver Directory offers a comprehensive database of caregivers, senior communities, and long-term care facilities, helping families find qualified caregivers familiar with HAE.

With proper management, support from healthcare professionals, and a strong support network, individuals with HAE can lead fulfilling lives despite their challenges. The CDC says understanding the symptoms, triggers, and management strategies is crucial for effectively coping with this condition.