where. can you find support when talking to others about your HAE?
If you are living with HAE, you know only too well how the disease affects you and your life. You may also have friends, family or other loved ones who support you and know what to do if you have an attack and need their support. But HAE may be unfamiliar to some people in your life.
It is especially important that your place of work or study knows about your HAE, understands what support you might need and when, and are familiar with your treatment. This will allow the right support and changes to be put into place to enable you to work and study without HAE getting in the way.
You may have already found ways to educate others about your HAE, but if you sometimes struggle to find the words, these resources may help. You can use these templates to create your own letters or emails that will provide your place of work or study with the details they need to support you effectively.
Template letter
If you have been prescribed Berinert, this letter will help inform your place of work or study about your disease, your treatment and what to do in an emergency. Download the letter and add your own details to personalise it.
Template email
If you prefer to contact your place of work or study by email, use the template copy provided below.. You can fill in your own details to personalise it to you, before copying the text into an email to send.
View the email template to copy and paste
Dear __________________
I’m writing to let you know that I am living with a rare medical condition called hereditary angioedema (HAE). This means while attending [school/work/the gym etc] there may be situations in which I need your support to access emergency medical attention.
Below, you’ll find more information about HAE and how it is treated.
What is HAE?
HAE can be caused by either low levels of the blood protein C1-esterase inhibitor (C1-INH) or having C1-INH that does not function properly. The condition can cause various parts of my body to swell up, and this is called an attack.
You can find out more about HAE at www.AllAboutHAE.co.uk
Life-threatening attacks
Some HAE attacks can be extremely serious and potentially life-threatening. If the swelling attack is in my face, mouth, throat or airway, I will need immediate emergency care and may need your support to ring the emergency services.
Call 999 immediately if you notice:
Hoarse voice or laryngitis, whistling or wheezing when breathing, shortness of breath or swelling to the lips, tongue, face or throat
While my swelling may look like an allergic reaction, it is not. So I won’t typically respond to antihistamines or corticosteroids if I have an attack. I take a specific medication prescribed to me for HAE attacks.
My medication replaces the missing or non-functioning C1-INH in my blood. [If you self-administer your treatment, complete with details of your medication and dose, as well as where you keep your treatment and remove the next section]
______________________________________________________________________________________
______________________________________________________________________________________
__________________________________________________________________
I keep my treatment: __________________________________________
[If you would usually receive treatment in hospital for an HAE attack, please fill out the details below and remove the section above]
I usually travel to hospital to receive the following treatment for my HAE: ______________________________________________________________________________________
______________________________________________________________________
Please print and keep this email on file, along with my emergency contact information, provided below. It is important to ensure all members of staff who need to know are aware of its contents so they can help me access treatment and care during an attack.
All the best
_________________
Emergency contact information
My chosen contact
Name: _________________
Relation to me (e.g., family, partner, etc): _________________
Home telephone: _________________
Mobile: _________________
Email address: _________________
My doctor or nurse specialist
Name: _________________
Office telephone: _________________
Mobile: _________________
Email address: _________________
Address of hospital:
_______________________________
_______________________________
_________
In emergencies, please call: _________________
Digital Discussion Guide
For support when talking with your doctor about your HAE, you can use this discussion guide. It contains some tips on how to communicate what is important to you to help you and your doctor have a more effective conversation.
