Self-treatment and home delivery
People with the most common types of severe bleeding disorders are able to keep treatment at home in case of a bleed and also for prophylaxis. A nurse can show you how to dissolve the concentrate in a vial of sterile water and use the manufacturer’s specially designed syringe and needle to inject the treatment into one of your veins. Some people needing very regular treatment, especially children, often have a port-a-cath surgically fitted for easy access to a vein in the chest.
Home-delivery of treatment benefits over 200 patients in Scotland. Check the vials’ expiry dates for how long you can keep them and note the temperature they need to be stored at. You will also need to keep records of the dates of and how much treatment you have injected.
Food and drugs to avoid
Your haemophilia centre can always advise about what food and drugs promote bleeding. Drugs that should not be taken (or only used in consultation with your haematologist) include non-steroidal anti-inflammatory drugs (NSAIDs, see p16) and certain anti-depressives.
Some herbal drugs are also not recommended. These include:
● Ginkgo biloba
● Garlic in large amounts
● Ginger (not dried ginger)
● Ginseng (Asian)
● Feverfew
● Saw Palmetto
● Willow bark
Telling others about your condition
Many people in a new relationship worry about when and what to tell their partner. There are no hard-and-fast rules, but it is usually best to wait until they have got to know you and see how you lead a normal life. If you wait too long, however, you risk them feeling hurt about being kept in the dark. Sex is not usually a problem even if you have a severe bleeding disorder, but if you are living with a sexually transmitted infection from contaminated treatment used before safer alternatives became available, then using a condom will help prevent your partner from becoming infected.
New partners and friends will feel more reassured if they have information such as is found in this handbook.
Accessibility-friendly venues
If accessibility is something you need to consider when taking into account places to eat, sites to visit etc., then take a look at Euan’s Guide. “Euansguide.com is the disabled access review site where disabled people, their family, friends and carers can find and share reviews on the accessibility of venues around the UK and beyond. The site is an invaluable tool for everything from planning a day out, to picking a last-minute place for coffee or lunch.”