Haemophilia is a rare condition that can be particularly difficult to wrap your head around. In this blog, we will be explaining what haemophilia is, how it can affect your life, what the treatments are and how MedicAlert can help you live a normal life.

Haemophilia is a medical condition that affects the blood's ability to clot. Patients with haemophilia can bleed for longer than others and also bleed more easily. This means that those with haemophilia are more at risk of excessive loss of blood from less serious injuries than normal. As the bleeding may be internal, such as after a car accident, it can lead to life-threatening consequences if it is not known about.

Less than 0.01% of the population (around 6000) have haemophilia, making it very rare and unknown to a huge amount of the population.

You may be asking, why does someone have haemophilia? Well, usually, people are born with the protein “clotting factor” which is what helps the blood clot. Those born with Hemophilia have little to no clotting factor.

The condition is normally inherited when a child is born, from either the mothers or fathers genes. However, the condition can occasionally occur without either parent having or carrying the mutated gene, by the gene mutating unexpectedly before birth. You cannot therefore catch the condition, you are simply born with it.

What are the differences between Haemophilia A, B & C?

The different types of haemophilia relate to the specific protein that is changed. Haemophilia A, the most common, refers to the protein “factor VIII” being missing. Haemophilia B refers to “Factor IX” and haemophilia C refers to “Factor XI” missing.

Haemophilia A & B are caused by change to their respective proteins in the X chromosome. Men only have one X chromosome and women have two, which means that both A and B are more common in men than women, as women can ‘carry’ the gene in just one chromosome without having the consequences.

Jacob’s Story

Jacob has haemophilia B and cannot be given aspirin.

He wears his MedicAlert bracelet with pride. His mum, Eloise, now has peace of mind when Jacob is away from her, whether it be on a school trip or at one of his various after school clubs.

She knows that, should Jacob have an emergency, the leaders and teachers will have access to his details via the engraving on his MedicAlert Sports Band. 

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What are the symptoms of haemophilia?

The symptoms of haemophilia depend on how severe the condition is, however the main indication is prolonged bleeding.

Bleeding can happen after injuries, medical procedures or even dental procedures. However it can also happen without any specific cause, for example, spontaneous bleeding gums, nosebleeds or bleeding inside the joints.

Haemophilia severity is determined by the level of clotting factors in your blood.

• Mild haemophilia is when there is 5% - 50% of the normal clotting factors
• Moderate haemophilia is between 1% - 5%
• Severe is anything under 1%

So how can we tell the difference between the severity levels of haemophilia?

Mild Haemophilia

Mild haemophilia can be unnoticed in children for many years without any symptoms as it won’t most likely affect their day to day life.

It usually becomes apparent after obtaining a wound or undergoing surgery or a dental procedure, where the event causes an unusually long period of bleeding.

Moderate Haemophilia

People with moderate haemophilia are affected in a similar way to those with mild haemophilia. However, they can bruise more easily and may also have symptoms of internal bleeding around the joints such as a tingling feeling of irritation and mild pain in the area.

This usually happens if they have a knock or fall that affects the joint, with the joints most commonly affected being ankles, knees and elbows. If not treated it can lead to more severe pain, stiffness and swelling.

Severe Haemophilia

Severe haemophilia symptoms include those found in moderate haemophilia, but the bleeding is much more frequent and severe.

Those living with severe haemophilia can also have spontaneous bleeding, such as nosebleeds, bleeding gums, joint bleeds and muscle bleeds. Without treatment, people can develop serious internal bleeding, soft tissue bleeding and joint deformity.

What are the treatments for haemophilia?

There are two main types of treatment for haemophilia:

1. Preventative treatment, where medicine is used to prevent bleeding.
2. On-demand treatment, where medicine is used to treat bleeding as it occurs.

Preventative treatment

Preventative treatments involve regular injections of clotting factor medicine to prevent excessive bleeding.

If your child has haemophilia, you will be trained to give them the injections when they're young and then, as they get older, they will be taught to inject themselves.

In some cases the injections may be given via a device called an implantable port. This is surgically placed under the skin, so that you do not have to find a vein for every injection. In turn, this means that veins are not weakened by repeated injection.

Most preventative treatment is continued for life. However, some people can change to on-demand treatment, but may be advised to switch back if they experience significant bleeding.

Different types of haemophilia will have different medicines according to the different clotting factors they are missing.

On-demand treatment

With mild or moderate cases, treatment may only be necessary as an immediate response to bleeding. This is usually via on-demand injections of medicine, depending on the type of haemophilia.

Living with Haemophilia

Living with haemophilia can feel difficult or scary, due to the complications that can arise.

The most common issue to consider relates to the joints. Joint bleeds can damage the soft spongy tissue, cartilage, within your joints. The more damaged the joint is, the more vulnerable it is to bleeding, and eventually the joint may need to be replaced surgically.

Joint damage is more common in older adults, it is hoped that children today with haemophilia will not have joint damage when they grow up due to the modern treatments.

Much less common, but a bigger concern to many people living with haemophilia, is the potentially life-threatening consequences of an accident. If someone with haemophilia is in a car crash and becomes unconscious, those first at scene and the paramedics treating them may have no visual sign that they are experiencing an internal bleed and, therefore, will not know to administer emergency on-demand medication. They may also prioritise other victims due to a perception that this individual is not heavily injured.

Equally, experiencing a severe cut via an accident can lead to a large amount of blood loss very quickly. Without the knowledge that someone is a haemophiliac, appropriate and timely treatment may not be provided quickly to stem the bleed.

How MedicAlert can help

MedicAlert membership and medical ID jewellery protects you, by making those caring for you in an emergency aware of your medical condition.

MedicAlert can give you the peace of mind to go out and enjoy life, knowing that we are there to speak for you in times of need, enabling fast and appropriate care decisions to be made.

If you or your loved one is living with haemophilia, find out more about the MedicAlert service or become a member today.