My HAE Diary · My HAE Diary Keep track of your hereditary angioedema (HAE) episodes This diary has been developed and funded by Takeda Pharmaceutical Company Limited

My HAE DiaryKeep track of your hereditary angioedema (HAE) episodes

This diary has been developed and funded by Takeda Pharmaceutical Company Limited.

IMPORTANTIf you get any side effects, talk to your doctor, pharmacist or nurse. This includes any possible side effects not listed in the package leaflet. UK: You can also report side effects directly via the Yellow Card Scheme at: www.mhra.gov.uk/yellowcard or search for MHRA Yellow Card in the Google Play or Apple App Store. IE: You can also report side effects directly via HPRA Pharmacovigilance, Earlsfort Terrace, IRL - Dublin 2; Tel: +353 1 6764971; Fax: +353 1 6762517. Website: www.hpra.ie; e-mail: [email protected]. By reporting side effects you can help provide more information on the safety of the medicine.

IntroductionWith a rare disease like HAE, life may sometimes feel overwhelming and even a bit isolating. Whether you’ve just been diagnosed, or you’ve been living with HAE for many years, being prepared and staying on track is essential. That’s because HAE episodes are unpredictable and can disrupt important aspects of your life.

This diary will help you to keep track of your HAE episodes and identify any potential triggers. By better understanding your HAE and what can trigger an episode, you can build a life that isn’t all about your HAE—but about what matters to you most.

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Personal informationYour details

Name:

Date of birth:

Address:

Telephone:

Email:

National health number (UK only):

Allergies:

Essential information:

Healthcare professional details

HAE specialist:

HAE specialist telephone:

General practitioner (GP):

GP telephone:

Other contact(s):

Emergency contact details

Name:

Telephone:

Address:

Caregiver details

Name:

Telephone:

Address:

Symptoms of HAEThe main symptom of HAE is swelling, which usually worsens over the first 24 to 36 hours and then gradually gets better within 48 hours.

Some people may have:

Tingling feeling, known as prodromal sensation

Changes in bowel habits

Flu-like symptoms

Tiredness

A gradually spreading rash known as erythema marginatum

HAE triggers may include Pressure or trauma to the skin

Repetitive motion or contact

Medical and dental procedures

Emotional stress

Infections

Hormonal changes

Keeping a recordYou can use this diary to keep a record of your HAE episodes and treatments. It is also good to keep a record of your daily activities so you can easily review your past experiences and be prepared in the future. HAE episodes can potentially develop without warning and with no clear cause. Keeping a diary may help you to see patterns and potential triggers so you can avoid these situations as much as possible.

Understanding HAEHAE is a rare genetic disorder. People with HAE have a defect in the gene that makes C1 inhibitor, an important protein that helps your body fight diseases and respond to inflammation and blood clotting.

C1 inhibitor plays an important role in regulating the blood system that produces chemicals responsible for inflammation and swelling in HAE episodes. In HAE, a genetic defect affects the production of C1 inhibitor in one of two ways:

1. Not enough of the protein is made

2. The protein is produced but does not work properly

Types of HAE episodes* KEY FACTS Swelling episodes can happen anywhere in the body, including the throat, abdomen, face, hands, feet and genitals

HAE is commonly misdiagnosed because the symptoms of HAE can mimic other conditions

A child has a 50% chance of inheriting HAE if one parent has the disorder

The symptoms of HAE can occur at any age, but usually begin around adolescence

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*This is not an exhaustive list.

Laryngeal (throat) episodes that can be life threatening

Extremities e.g. swelling of the hands and feet

Abdominal episodes causing abdominal pain nausea, vomiting, diarrhoea, and dehydration

Tips and adviceLiving with a rare disease like HAE can make people feel different, isolated and afraid. The good news is, you’re not alone.

Prepare your family and friendsHAE episodes can begin without warning and can worsen quickly. If you’re too ill to help yourself, the people around you can really make a difference. Teach your family, loved ones and close friends how to recognise the signs that an episode may be coming and what to do if it gets serious.

It is also a good idea to carry an emergency card with you, identifying yourself as someone with HAE.

Ask your HAE Specialist the right questionsTo make sure you’re getting the best possible care, you should go to your appointment with important questions, such as:

Minimise stress in your lifeStress is a known trigger for HAE episodes. While it’s hard, try to minimise stress in your life whenever possible. If you know there is an event or occasion coming up that has the potential to cause you stress, like a party you’re planning or a major deadline at work, get a head start and plan ahead. If a stressful situation sneaks up on you, try relaxation techniques or share your concerns with your family or friends. Don’t be afraid to ask others for help.

Plan ahead and be prepared when travellingJust in case, carry an emergency card that shows who you are, that you have HAE, what treatment you’re taking, and who to contact in an emergency.

If you are travelling, you will need to carry your medication with you. Remember to ask your HAE Specialist for a letter detailing what medications you will need to carry.

HELPFUL WEBSITESwww.haeuk.orgHAE UKTel: 07975 611787HAE UK is a patient support group providing advice and support for those affected by HAE.

www.nhs.ukNHS Choices

www.hse.ie/eng/health/az/a/angioedema/The Health Service Executive website is relevant for Ireland and is an independent source of unbiased and relevant advice on HAE for patients.

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Do they know where your nearest

hospital is?

Do they know who your

HAE Specialist is?

Do they know how to help you get

your treatment?

How can I help manage stress in my daily life?

What lifestyle changes could I make to help improve how I manage my disease?

Am I taking any medicines that may trigger episodes?

If so, are there other treatment options?

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My current medication

Medication:

Dose: Dosing instructions:

Medication:


Medication:


Medication:


Medication:


Medication:


Medication:


Medication:


Medication:


Medication:


Medication:


Medication:


HAE diary page exampleDate of episode Start time of episode

Severity Please circle

Location of swelling(s) Mark on the image and/or describe below

HAE medication taken

Name:

Dose:

Batch number:

Time taken:

Other medication taken

Date and time episode subsided

Potential trigger(s)

Any adverse reactions to medication?

Any warning signs?

Mild Moderate Severe

1/3/19

Product X1000 IU

XXX/XXX3:45pm

None

1/3/19 at around 8pm

Slight rash

Possibly stress

Tingling in hands

10:30am

Both hands

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Important dates and appointmentsJanuary February

March April

May June

July August

September October

November December

Date of episode Start time of episode




Name:

Dose:

Batch number:

Time taken:





Any warning signs?

HAE diaryDate of episode Start time of episode




Name:

Dose:

Batch number:

Time taken:





Any warning signs?

Mild Moderate SevereMild Moderate Severe

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Any warning signs?





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How to order a new diaryWhen you have used up all the blank pages in your HAE Diary, you can ask your doctor or nurse for a replacement. It’s a good idea to ask for a replacement before you run out.





Name:

Dose:

Batch number:

Time taken:





Any warning signs?

Mild Moderate Severe

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Takeda Pharmaceuticals Company Limited

1 Kingdom Street, London, W2 6BD

Job code: C-ANPROM/UKI//0168 Date of preparation: April 2019

Documents

My HAE Diary · My HAE Diary Keep track of your hereditary angioedema (HAE) episodes This diary has been developed and funded by Takeda Pharmaceutical Company Limited