Living with HAE
Living with HAE and how you manage the symptoms varies from patient to patient. Whilst some people rarely suffer attacks, others suffer more than one attack per week, which can make daily living quite challenging. Every patient is different.
If you are having difficulties managing your attacks, it is important to discuss this with your consultant or specialist nurse as soon as possible. Keep a diary of your symptoms, include dates and times and how the attack impacted on your day-to-day living.
HAE UK is able to offer one-to-one support, can advise on your nearest HAE consultant and offer information about medications and managing attacks, along with many other things.
Employment
Unpredictable HAE attacks can affect every area of life including your work life. The very first step to managing the impact of HAE attacks on your work life is to work with your HAE Consultant to set up a treatment plan that will reduce the number of your attacks. Even with the best HAE management plan in place you may still face difficulty because of unpredictable HAE attacks. Whilst HAE UK is unable to provide individual support, we can provide a letter explaining HAE to your employer or other as required, explaining how this can affect patients’ day to day.
Your employment rights
HAE is classed as a disability. For more information see: www.gov.uk/definition-of-disability-under-equality-act-2010
You are not obliged to disclose medical information to your employer unless they ask you directly. However, it might be helpful to talk about the impact of HAE on your life at an early stage so that you can discuss what reasonable adjustments can be made for you in the workplace. To understand your rights and reasonable adjustments that should be made, see the HSE website or the gov.uk. website
Children also have rights with regard to their education, see the gov.uk website for more information (link)
Benefits
There are some benefits available to people who are severely affected by HAE. The type of benefit will depend on whether you are a child, the carer for a child, or an adult HAE patient, and how HAE affects your day to day living. You can find out if you are entitled to any of these benefits by visiting the Citizens Advice website
