Living with bleeding disorders

Bleeding disorders

Bleeding disorder card

If you are registered with a bleeding disorder at our centre, we will give you a bleeding disorder card, that gives details of your condition, and contact numbers for our centre. Always try and carry your bleeding card, in case of a medical emergency.

If you need a replacement card, please contact our home delivery team, phone: 020 7188 2809 or email: [email protected].

Some people also choose to wear a MedicAlert bracelet or pendant listing their medical details.

Surgery and bleeding disorders

If you have a bleeding disorder and need any type of surgery, you will need to tell the haemophilia team. This includes any minor procedures, such as dental work, a biopsy, or endoscopy.

Planned (elective) surgery

Give us full details of the planned surgery as soon as possible. This should include the name of the procedure, the hospital where it will be done, and the name and contact details of the surgical team. It does not matter if you do not yet have a confirmed date for surgery.

The haemophilia team need to work with the surgical team to:

develop a treatment plan (surgical plan)
organise any tests that may be needed
make sure that specific treatment (if needed), will be available for your surgery

It is best if we have at least 2 weeks’ notice of any procedure.

Sometimes we recommend that surgery is done at one of our hospitals so that you can be closely monitored, and treatment given to reduce the chance of bleeding during or after surgery. This will depend on your condition and the procedure needed.

If there are any changes to the arrangements for your surgery, such as the date being moved, please let us know as soon as possible so that the correct plans are in place.

Private surgery

In addition to the advice above, if you are considering having surgery privately (in a non-NHS hospital), please let us know as soon as possible. Depending on your condition and the surgery you need, we may sometimes advise against this, and help you to arrange the surgery via the NHS instead. This is because most private hospitals do not have the specialist haemophilia clinical or laboratory services needed to monitor the bleeding disorder aspects of the surgical care. There may also be funding issues if clotting factor replacement is required.

Emergency surgery

If you are admitted to a hospital for emergency surgery, you or a family member must make the medical team aware that you have a bleeding disorder, and tell them to contact us for advice. This is so that the correct treatment can be given to minimise the chance of any bleeding complications with the surgery.

Dentistry and bleeding disorders

People with bleeding disorders are encouraged to register with a local dentist and have regular check-ups, ideally every 6 months. It is important to maintain healthy teeth and gums to avoid needing dental work and gum disease, as both can cause bleeding. Please make sure that your dentist knows about your bleeding disorder.

If dental work or an extraction is required, bleeding disorder treatment may be needed before and after the procedure, to prevent bleeding. Sometimes it will be safest to have the procedure in our special care dentistry service.

Please tell the haemophilia team of any planned dental work, and we can advise you.

The Haemophilia Society have more information about dental work in people with bleeding disorders.

The NHS have information about finding an NHS dentist

Vaccinations, tattoos and piercings, and bleeding disorders

Vaccinations, tattoos and piercings can cause excessive bruising or bleeding if you have a bleeding disorder.

Please ask for our advice if you are considering a tattoo or piercing.

If you have been diagnosed with a bleeding disorder it is important to have all routine vaccinations that are offered to you, and these can be given at your GP surgery.

We also generally recommend that people with bleeding disorders consider being vaccinated against hepatitis A and B, especially if you need plasma-derived factor products (made from donated human blood) as part of your treatment. These vaccinations can be arranged through your GP surgery.

Generally, people with bleeding disorders should have vaccinations administered subcutaneously instead of intramuscularly. This means that they are given just under the skin, and not deep in the muscle. If you have problems arranging subcutaneous vaccinations, please contact us.

Sometimes, people with bleeding disorders can have vaccinations in the standard intramuscular way, but pressure must be applied to the injection site for a few minutes afterwards. You can have intramuscular injections if you:

have haemophilia A and are on emicizumab (Hemlibra^®), and you will not need extra FVIII (F8) concentrate
are on regular home treatment with factor replacement, provided you have had your usual dose of factor replacement on the day of the vaccination (before the vaccination)
have been diagnosed with a mild bleeding disorder in adulthood, and have always had intramuscular vaccinations without any problems

Other medicines and bleeding disorders

Some medicines can cause increased bleeding or bruising, and should generally be avoided if you have a bleeding disorder.

These include:

aspirin
anti-inflammatory medicines, such as ibuprofen, naproxen, and diclofenac
anticoagulants (sometimes called blood thinners), such as apixaban, rivaroxaban, dabigatran, warfarin, and heparin

Paracetamol is safe for people with bleeding disorders.

It is also worth checking that any supplements or herbal or homeopathic remedies that you buy in a pharmacy or shop, do not have increased bleeding as a possible side effect.

Generally, extra care should be taken with intramuscular injections of medicines (such as vitamin B12) as they can cause bruising. In severe bleeding disorders these should be completely avoided. Please talk to the Haemophilia centre if you have been recommended an intramuscular medicine. Subcutaneous injections do not carry a significant bleeding risk.

If a medical professional prescribes you a new medicine, make sure they are aware of your bleeding disorder. Please contact us if you have any questions about your medicines.

Travel and bleeding disorders

When you travel away from home it is important to:

carry your bleeding card
arrange appropriate travel insurance
take some treatments with you in case you have bleeding problems
be aware of the nearest haemophilia centre is when you are away (The European Haemophilia Network and World Federation of Haemophilia can help you find them)
always carry your treatments in your hand luggage

We can provide a travel letter to show relevant officials, if you will be carrying treatments in your luggage. Please contact the haemophilia nurses to request one.

The Haemophilia Society have more information about travel and travel insurance.

Maintaining a healthy lifestyle

Staying fit and active is important for everyone, including people with bleeding disorders.

For people with moderate or severe haemophilia, maintaining good muscle strength, balance, and power will help reduce your risk of bleeding events in your joints and muscles. General exercise will also help to reduce the impact of haemophilia-related arthritis by:

reducing pain
minimising the loss of joint range
helping to maintain strength and function
maintaining a healthy weight

The centre has a dedicated physiotherapist for our patients. All our haemophilia patients are regularly reviewed for any musculoskeletal issues, and they can self-refer to the centre physiotherapist.

Managing conditions like heart attacks and strokes can be complicated for people with bleeding disorders, because aspirin and blood thinners are often not advised. It is therefore important to minimise the chance of getting cardiovascular disease by maintaining a healthy lifestyle.

Support and more information

The NHS website has information about:

General health and exercise

Maintaining a healthy weight

Smoking cessation (stopping smoking)

Alcohol advice

Drug addiction

Mental health

Having a chronic health condition can seriously affect your mental health. This is especially the case if there is associated pain, disability, or financial burdens.

People who have been affected by the contaminated blood scandal have had to deal with particular challenges. Please let us know if you are struggling psychologically. There is a dedicated haemophilia psychologist who we can refer you to.

The NHS and the Haemophilia Society have advice about mental health.

Samaritans is a confidential support service for anyone in extreme distress or despair, freephone: 116 123

South London and Maudsley (SLaM) 24-hour mental health support line for anyone who needs advice, help or assistance with their mental health, or the mental health of someone they are supporting, phone: 0800 731 2864

Southwark mental health services

Lambeth mental health services