Post on 14-Aug-2020
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: medsafety@hpra.ie. 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.
2 3
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
4 5
*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.
6 7
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?
8 9
My current medication
Medication:
Dose: Dosing instructions:
Medication:
Dose: Dosing instructions:
Medication:
Dose: Dosing instructions:
Medication:
Dose: Dosing instructions:
Medication:
Dose: Dosing instructions:
Medication:
Dose: Dosing instructions:
Medication:
Dose: Dosing instructions:
Medication:
Dose: Dosing instructions:
Medication:
Dose: Dosing instructions:
Medication:
Dose: Dosing instructions:
Medication:
Dose: Dosing instructions:
Medication:
Dose: Dosing instructions:
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
10 11
Important dates and appointmentsJanuary February
March April
May June
July August
September October
November December
Date 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?
HAE diaryDate 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 SevereMild Moderate Severe
12 13
Date 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?
Date 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 SevereMild Moderate Severe
14 15
Date 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?
Date 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 SevereMild Moderate Severe
16 17
Date 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?
Date 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 SevereMild Moderate Severe
18 19
Date 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?
Date 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 SevereMild Moderate Severe
20 21
Date 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?
Date 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 SevereMild Moderate Severe
22 23
Date 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?
Date 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 SevereMild Moderate Severe
24 25
Date 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?
Date 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 SevereMild Moderate Severe
26 27
Date 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?
Date 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 SevereMild Moderate Severe
28 29
Date 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?
Date 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 SevereMild Moderate Severe
30 31
Date 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?
Date 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 SevereMild Moderate Severe
32 33
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.
Date 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
34 35
Takeda Pharmaceuticals Company Limited
1 Kingdom Street, London, W2 6BD
Job code: C-ANPROM/UKI//0168 Date of preparation: April 2019