How well is your disease controlled? 

HAE varies greatly from person to person: some may have several attacks per month, while attacks for others are rare.1

 

Therefore, once you have been diagnosed with HAE, it is valuable to record your symptoms on a regular basis. Keeping track of your HAE attacks in a swelling calendar is helpful to understand how effective your HAE management plan is, and it can be used to inform discussions with your doctor. You could use either paper or electronic symptom diaries for this, such as the HAE TrackR App.2 The HAE TrackR App was developed by HAE International, a patient organization, to help patients with HAE track their treatments (preventative and on-demand), HAE attacks, and overall well-being.2

 

Are you keeping track of your attacks?

 

In your diary it is useful to record as much information as possible on your attacks, such as the affected body part, the duration and severity of the attack, which on-demand medication you used and how quickly you responded to the treatment.3

 

You should also record the level of disruption your attack had on your usual daily activities. Information recorded in your symptom diary can be shared with your doctor during your appointments to assess the disease course and improve decision-making regarding your HAE action plan.2

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What to discuss with your doctor

To ensure you are receiving the most effective therapy and are on an optimal disease management plan, you should have regular consultations with your doctor at least once a year. 

 

This might be more frequent if you have been newly diagnosed or if you are receiving LTP, to more closely monitor whether your HAE is controlled. 

 

Your doctor should discuss with you to collaboratively decide on a treatment plan, taking into account your preferences.

 

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It is recommended that that you keep track of your disease activity, recording  the impact of HAE on your life, and knowing how well your HAE is controlled currently; this is especially important if you use LTP.5 Together, this information can help to direct discussions with your doctor on how best to manage your HAE and to make appropriate changes in your treatment when and if needed.5 

 

 

Download a discussion guide

 

It’s helpful to take some time to think how HAE impacts your quality of life and consider how your management plan could be improved. This discussion guide can be used to aid conversations with your doctor about managing your HAE. 

 

Download here

Discussion Guide

HAE management when travelling

When planning any travel for work or leisure it is important to consider your HAE management plan to ensure you enjoy your travels and feel safe. 

 

Before travelling, you should discuss your HAE management plan with your doctor and ensure you have enough emergency on-demand treatment for any attacks, even if you are taking prophylactic treatment. 

 

Your on-demand treatment should be accessible at all times and carried in your hand luggage. Visit the HAE International website for more information and tools for travelling abroad, such as the HAE Companion App, which has HAE Emergency Cards in many languages.2

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References

1. Bork K, Anderson JT, Caballero T, Craig T, Johnston DT, Li HH, et al. Assessment and management of disease burden and quality of life in patients with hereditary angioedema: a consensus report. Allergy Asthma Clin Immunol. 2021;17(1):40.

2. HAEi: HAE International. HAE TRACKR  [HAE TrackR]. Available from: https://haei.org/resources/apps-2/.

3. Busse PJ, Christiansen SC, Riedl MA, Banerji A, Bernstein JA, Castaldo AJ, et al. US HAEA Medical Advisory Board 2020 Guidelines for the Management of Hereditary Angioedema. J Allergy Clin Immunol Pract. 2021;9(1):132-50.e3.

4. Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, et al. Shared decision making: A model for clinical practice. J Gen Intern Med. 2012;27(10):1361–7.

5. Maurer M, Magerl M, Betschel S, Aberer W, Ansotegui IJ, Aygören-Pürsün E, et al. The international WAO/EAACI guideline for the management of hereditary angioedema-The 2021 revision and update. Allergy. 2022;77(7):1961–90.

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