Work & School Life
Self-management of a chronic illness like HAE extends beyond managing just the disease to managing the impact of its symptoms on everything we do – our occupations and our daily life.
People with HAE are able to create individualized management plans – optimally, following the 2019 International / Canadian HAE Guidelines and in partnership with their HAE treating physician.
Being able to continue with a meaningful work life is fundamental for many of us to our identity and sense of self. Today, HAE patients can function fully in their day-to-day lives as they manage their disease with Health Canada Approved HAE Treatments.
Research shows that people with chronic conditions do different types of work: work to manage the symptoms, the medicines, the treatments; work to manage occupation and continue ‘normal’ daily life; and work to maintain their familiar identities (Corbin & Strauss, 1988; Townsend, Wyke, & Hunt, 2006).
In the old days of HAE, patients often had to take a stoic approach, with a determination to ‘push through’ the pain or other symptoms and to protect their jobs. “Tough it out” was the approach to leisure activities, too. This was a frustrating way to live, to say the least.
Today, HAE patients can function fully in their day-to-day lives. Health Canada approved treatments and a management plan created in partnership with your HAE treating physician make it possible to continue in your chosen occupation.
Besides treatment, it is important to maintain a positive attitude, organizing daily tasks and having a good support system around you. With appropriate treatment, it is no longer necessary to live in the dark ages of scaling back, stopping activities or just suffering through your HAE attacks.
School age kids with HAE are not alone; chronic illnesses affect at least 10 to 15 percent of children. With teamwork, students can manage their HAE and meet their maximum potential.
A team approach means parents work together with schools, health care providers, and their community to provide a safe and supportive educational environment for their students with HAE; to ensure that these students achieve their educational goals.
Students with HAE can function to their maximum potential if their needs are met. With a full HAE management plan, they can enjoy better attendance, fewer restrictions on participation in physical activities and special activities (such as field trips) and fewer medical emergencies.
- Notify the school of your child’s HAE diagnosis and supply school staff with their HAE management plan (keep the plan up-to-date)
- Provide authorizations for administering medication and emergency treatment, signed by the your child’s health care provider
- Participate in the development of a school plan: 1) Meet with the school team to develop an accommodations plan and 2) Authorize contact between school health staff and your child’s HAE physician
- Provide an adequate supply of acute HAE therapy, if you have it, in pharmacy-labeled containers, and other supplies to the school health staff. Replace medications and supplies as needed. A dedicated supply should remain with the school,
- Provide the school with a way to contact you or another responsible person in case of an HAE attack and/or a medical emergency
- Promote good general health, nutrition, and physical activity
- Notify an adult about any concerns and needs you may have managing your HAE at school
- Participate in the care and management of your health as appropriate to your developmental level
With teamwork, students can manage their HAE and lead a normal school life!
Many parents of children with HAE are unsure about how to approach their child’s school. Here we provide some materials to help you work together with your child’s school. The materials are provided only as a general guide. You will want to personalize any materials that you provide to your child’s school to reflect his/her own particular needs and situation.
HAE: You and your child’s school
How will the school respond if my child misses too many days of school? How will my child make up missed assignments? An HAE school packet can be a great resource in this regard.
Please click here to download useful information on putting together a school packet. The packet includes an example of a letter you can share with your child’s teacher.