Mild Haemophilia is a very manageable health condition. If you have mild haemophilia it may have little impact on your life as long as you know what to do to prevent bleeding and how to manage bleeding if it occurs.
The lack of clotting factor causes people with haemophilia to bleed for longer periods of time than people whose clotting factor levels are normal. People with haemophilia do not bleed faster than other people, and will not bleed to death from a minor cut or injury. The main problem for people with haemophilia is bleeding internally, for example into muscles or joints. People with mild haemophilia may only have bleeding problems requiring treatment when they have a serious injury or wound, for example, after an accident, surgery or dental extractions. If they have not had any injuries or operations, they might not even be aware they have mild haemophilia and might not be diagnosed until they are older.
Important things to know if you have mild haemophilia:
• What type of haemophilia you have
• How to prevent bleeding and how to treat a bleed
• When to seek help
• Where to go for help and more information
Mild & Moderate Haemophilia Webinar
Haemophilia is an inherited disorder. This means it is passed from generation to generation, from the parent to the child. If someone is diagnosed with mild haemophilia, it is likely that other members of their family also have haemophilia or carry the gene (Read more). The Haemophilia Centre team will discuss the family history regarding bleeding problems in other family members and some may also need to be tested for haemophilia.
If you know that haemophilia is in your family and you are having a baby, you should discuss this with their Haemophilia Centre and obstetric teams as specialist advice is needed for mothers and babies to reduce the risks of bleeding during labour and delivery.
What type of haemophilia you have?
There are two types of inherited haemophilia. Both have the same symptoms. If you or your child has haemophilia, it is important to know what type of haemophilia it is:
• Haemophilia A, also known as Factor VIII (Eight) deficiency, or
• Haemophilia B, also known as Factor IX (Nine) deficiency
Each type of haemophilia requires a different clotting factor treatment.
If you have mild haemophilia you will have a Factor VIII or IX level between 5-40%. The normal range of Factor VIII and IX is 50-200%.
Your Haemophilia Treatment Centre will give you a wallet size card called the Bleeding Disorder ID Card, with brief details about your or your child’s diagnosis, recommended treatment and who to contact in an emergency. Keep this card with you and show it to doctors, nurses, ambulance drivers and other health professionals who provide your or your child’s care.
How to prevent bleeding and how to treat a bleed
The small knocks, twists, bruises, minor cuts and scratches that are part of everyday living are not usually a problem with mild haemophilia. They can be treated with normal first aid, such as putting on a plaster/bandage and applying some pressure at the site of bleeding. To reduce bruising, pain and swelling for larger bruises, strains, sprains, muscle/joint pain you should start the PRICE procedure quickly:
• PROTECTION – use a sling for an arm injury and crutches if you have them for a leg injury
• REST – no strenuous activities and rest to reduce increased circulation.
• ICE – apply a cold pack (e.g. ice pack or frozen vegetables in a towel) for about 10-15minutes, then remove and reapply every two hours
• COMPRESSION – after icing, wrap the injury with a light elastic compression bandage. Make sure this is not too tight and remove it at night or if resting with the part elevated.
• ELEVATE – where practical, raise the injured body part above the level of the heart to reduce swelling
A more severe injury affecting the head or abdomen might result in internal bleeding. Other possible internal bleeds are those affecting a muscle or joint, which usually occur as a result of direct trauma/accident to the area. If bleeds are not treated quickly, they can take longer to stop and to heal. Serious bleeds can be dangerous and need medical attention immediately. These bleeds can be managed with appropriate treatment and you should always contact your Haemophilia Centre as soon as possible.
If bleeding symptoms, pain or swelling get worse in the first 24 hours or keep you awake overnight, contact your Haemophilia Centre for assessment and advice.
Women and Mild Haemophilia
Women with mild haemophilia may also be impacted by heavy periods or problems after childbirth. You should consult both your Haematologist and gynaecologist for investigation. (Read More)
When to seek help
After a significant injury or accident or before having medical or dental procedures you should contact the Haemophilia Centre as these can be complicated by prolonged bleeding in people with mild Haemophilia, especially if treatment is not given. Serious bleeding can cause lasting damage and sometimes can be life-threatening.
• Seek emergency treatment
• Where possible, contact the Haemophilia Centre
• The Haemophilia Centre may be able to call ahead to the Emergency Department and prepare for your arrival.
• Haemophilia is a rare condition and doctors or hospital staff may not be familiar with it. Ask them to make contact with the Haemophilia Centre and liaise with them regarding your or your child’s treatment. You can give them direct contact numbers which are on the back of the Bleeding Disorder ID card which you should carry at all times.
• All hospitals in Ireland should have product for treatment available for emergencies and the Haemophilia Centre can advise hospitals on its use if necessary.
• Where possible it may be more time efficient to attend a hospital with a Comprehensive Care Centre or a Haemophilia Centre
If you are at all uncertain about when or how to treat injuries or bleeding, contact your Haemophilia Centre for advice. Learning to self-manage treatment for your bleeding disorder happens over time.
How is it treated?
Your Haemophilia Centre will advise you on the best treatment for you. There are several types of treatment. Certain treatments may be useful in different situations and at different times. The Haematologist will look at all of this when they work with you or your child to decide the best treatment option. They will need to reassess the situation each time treatment is needed.
• Desmopressin (DDAVP) – is a synthetic hormone used to treat haemophilia A. It works by releasing the body’s stored factor VIII into the bloodstream to help blood clot.
• Tranexamic Acid (Cyclokapron) – acts by strengthening blood clots that have formed. This prevents the blood clot from being dislodged and bleeding restarting.
• Clotting factor Concentrates – Clotting factor concentrates containing either FVIII or FIX are available depending on which factor is low.
• Hormone Treatment, can help women who have heavy menstrual bleeding. Some of these hormones can increase factor VIII levels.
Read more ??
After treatment with clotting factor concentrate, occasionally people with mild haemophilia may develop antibodies – known as “inhibitors”, which make the treatment less effective. There are a number of ways to treat inhibitors and many people are successful in overcoming them while others have ongoing problems. (Read more)
Do I need to learn to treat at home?
Treatment that needs to be injected, such as DDAVP or factor concentrate, can be given in the Haemophilia Centre or it may be possible to learn to treat at home. This decision will be made by your Haemophilia Centre depending on your situation and if it is appropriate. The Haemophilia Centre will then train you if it you require treatment in your home. (Read more)
Medications to be avoided
Some medicines, vitamins and herbs interfere with the way clots are formed and may delay healing. If you have mild haemophilia, consult your Haematologist before taking:
• Medicines containing Aspirin
• Other drugs which affect platelets such as Clopidogrel (Plavix)
• Non-steroidal anti inflammatory drugs unless prescribed by a doctor with expertise in haemophilia (e.g. Ibuprofen, Neurofen, Brufen, Difene)
• Blood thinners such as Warfarin, Heparin or newer blood thinners (anticoagulants)
If you have mild haemophilia, it is fine to attend your own dentist for routine care such as check-ups, fillings, scale and polish, root canal, crowns and cosmetic work. You should inform your dentist about your bleeding disorder and advise him/her that further information is available from your Haemophilia Centre. However, should you need a tooth extraction, some deeper injections (known as an ID block), gum surgery or a dental implant, your dentist should contact your haemophilia consultant or nurse for advice as this type of treatment will usually need to be provided in a specialist centre.