Clotting factor replacement therapy is given by infusion into a vein – usually in the back of the hand or at the crook of the elbow. In small children and children with poor veins, repeated intravenous infusions can be difficult and a portacath or ‘port’ may be recommended by the doctor until it becomes easier to access other veins.
When treatment is first started, it is usually administered by a nurse or doctor at a Haemophilia Treatment Centre. These centres provide comprehensive care for people with haemophilia and other bleeding disorders. Visit the Haemophilia Foundation Australia for contact details of your nearest Haemophilia Treatment Centre.
If you require regular treatments, you can usually learn to administer your own treatment at home. Parents or carers can also be taught to administer treatment at home. Your Haemophilia Treatment Centre can give you more information on whether home treatment might be an option for you.
Some important things to remember
- Acute bleeds (i.e. those that are sudden in onset or severity) should be treated as quickly as possible, preferably within 2 hours. If in doubt, talk to your Haemophilia Treatment Centre.
- To facilitate appropriate management in emergency situations, you should carry easily accessible identification, indicating your diagnosis, severity of your bleeding disorder, inhibitor status, type of treatment product used, initial dosage for treatment of severe, moderate and mild bleeding, and contact information of your treating physician/clinic.
- The following situations are considered medical emergencies and you should urgently contact your Haemophilia Treatment Centre:
- All head injuries
- Significant headaches
- Sudden severe pain in the back
- Bleeding in the throat and/or neck.
- If you are unsure of what to do, always inform and seek the advice of your Haemophilia Treatment Centre.
Whether you have just been diagnosed with haemophilia or have been living with the condition for a while, it’s important to take an active role in managing your condition. This should involve keeping in regular contact with your Haemophilia Treatment Centre and adhering to any recommended treatment plan.
Storing clotting factor replacement therapy
In general, clotting factor concentrates should be stored in a refrigerator, at a temperature between 2°C and 8°C. Do not freeze as this could damage the product. Some products can be kept at room temperature for travel, but it is good practice to put them in a cool bag to prevent the product becoming too warm.
Storage recommendations may vary between treatments. For information on how to store your particular treatment, read the Consumer Medicine Information leaflet provided by the manufacturer in the pack or speak to your pharmacist or specialist. Your Haemophilia Treatment Centre is also a great source of information.