#
  • Is hemophilia contagious?

No. It is a genetic disorder and is only passed on through genetics. People cannot catch it from someone like a cold or from living with, being near or sharing a meal with a person with hemophilia.

  • How common is hemophilia?

Hemophilia is quite rare. About 1 in 10,000 people is born with Hemophilia A. About 1 in 50,000 people is born with Hemophilia B.

  • Is hemophilia life long?

A person born with hemophilia will have it for life. The level of factor VIII or factor IX in the blood usually stays the same throughout the person’s life.

  • Is there cure for hemophilia?

There is no cure for hemophilia. Gene therapy remains an exciting possibility and holds out the prospect of a partial or complete cure. There are many technical obstacles to overcome, but research currently underway is encouraging.

Technically, a liver transplant can cure hemophilia, since coagulation factors are produced by cells inside the liver. However, the risks of surgery and the requirement for lifelong medication to prevent rejection of the transplanted organ may outweigh the benefits.

  • Do people with hemophilia bleed to death if they get small cuts?

It is a common myth that people with bleeding disorders will bleed to death if they get small cuts. People with hemophilia do not bleed any faster than normal, but they can bleed for a longer time. But the cut should not be left to heal on its own, open site with prolonged bleeding may be vulnerable to infections.

  • Where do bleeds occur?

Most bleeding in hemophilia occurs internally, into the joints or muscles.

The joints that are most often affected are the knee, ankle, and elbow. Repeated bleeding without prompt treatment can damage the cartilage and the bone in a joint, leading to chronic arthritis and disability.

The most serious muscle bleeds are the iliopsoas muscle (the front of the groin area), the forearm, and the calf.

Some bleeds can be life-threatening and require immediate treatment. These include bleeds in the head, throat, stomach or iliopsoas.

  • What to do when bleed occurs?

First and foremost thing is to promptly administer clotting factor concentrates.

If the bleed is in the joints(knee, ankle and elbow), RICE(rest, ice, compression/bandages and elevation) can be applied.

The most serious bleeds (external major cut, muscles bleeds and head bleeds) can be life-threatening so needs an immediate medical attentions.

  • What is prophylaxis?

Prophylaxis is the regular use of clotting factor concentrates to prevent bleeds before they start. Injections of clotting factor are given one, two or three times a week to maintain a constant level of factor VIII or IX in the bloodstream.

  • What are inhibitors?

Inhibitors are a serious medical problem that can occur when a person with hemophilia has an immune response to treatment with clotting factor concentrates. When this happens, inhibitors (also called antibodies) form in the blood to fight against the foreign factor proteins. This stops the injected factor concentrates from working.

  • Does hemophilia affect females as well?

Many carriers do experience symptoms of hemophilia. A woman with levels of 40-60 percent of the normal amount of clotting factor who experiences abnormal bleeding is called a symptomatic carrier.

In rare cases, when a carrier female and a hemophiliac male have a daughter, she is likely to be born with hemophilia.

  • Is mother responsible for hemophilia?

Not really. The mother is the one who passes the hemophilia gene. However, it is the father’s sperm that determines if the child will be a boy or a girl. It is not the “fault” of one parent since both parents contribute to the outcome.
All of us have dozens of abnormal genes. We are unaware of most of them. It is purely by chance that a hemophilia gene is passed on to produce a child with hemophilia.

  • What are the chances of having a child with hemophilia?
  1. No sons of a man with hemophilia will have hemophilia.
  2. All daughters of a man with hemophilia will be carriers (called obligate carriers).
  3. If a carrier has a son, the son has a 50% chance of having hemophilia.
  4. If a carrier has a daughter, the daughter has a 50% chance of being a carrier.
  • How serious is hemophilia?

While hemophilia is not curable, it is most certainly treatable. With proper treatment, as outlined by your hematologist or Hemophilia Treatment Center staff, your children can have a normal life.

There are a few bleeds (internal bleeding episodes), particularly into the head and throat, that can be very serious – even life threatening. A fall from a height is one of the main causes of head bleeds. Should you suspect your child has a head bleed, take your child to hospital for immediate medical attention.

  • Will my child be okay?

Yes. With correct treatment and adopting safety measures regarding hemophilia, your child will be okay. As you learn more about managing hemophilia, you will become more confident.

  • How did my child get hemophilia?

Hemophilia is a genetic disorder and is caused due to change in the genes. This changed genes are passed on to future generations through pregnancy. Most people with hemophilia have a family member who also has a hemophilia. However, around a third of children born with hemophilia have no previous family history of the condition.

  • Did I do something wrong during pregnancy to cause this?

No, certainly not. Hemophilia is caused by genetic changes beyond your control. There is nothing you or your partner could have done to prevent your child having hemophilia.

  • Is mother responsible for hemophilia?

Not really. The mother is the one who passes the hemophilia gene. However, it is the father’s sperm that determines if the child will be a boy or a girl. It is not the “fault” of one parent since both parents contribute to the outcome.
All of us have dozens of abnormal genes. We are unaware of most of them. It is purely by chance that a hemophilia gene is passed on to produce a child with hemophilia.

  • Will my other new born children have hemophilia?

With every new birth, there is always 50% new chance a boy will be born with hemophilia and 50% new chance a girl will be a carrier, regardless of the fact you already have a child with hemophilia.

  • Can girls be born with hemophilia?

There is a condition to meet for a girl to be born with hemophilia. If a father has hemophilia and a mother is carrier, in that case there is 25% chance of girl being born with hemophilia.

Though if a girl is carrier, sometimes may experience symptoms of hemophilia. A carrier with levels of 40-60 percent of the normal amount of clotting factor who experiences abnormal bleeding is called a symptomatic carrier.

  • How do I know my child has a bleed?

First get the visual confirmation in case of joint or muscle bleeds. The bleeding site might be swollen or reddish-purple in color. Touching with back of your hand, the bleeding site might feel slightly warmer than other parts. The child might be reluctant to move the joint with bleeding and have have intense pain.

In case of stomach bleed, the stool might have red fresh blood or the stool might be very dark in color.

In case of head bleed, there are obvious symptoms. The child might have complaints of continuous headache, frequent vomiting, blurred vision or dizziness. This needs immediate medical attention.

  • What do I do when my child has a bleed?

First and foremost thing is to promptly administer clotting factor concentrates.

If the bleed is in the joints(knee, ankle and elbow), RICE(rest, ice, compression/bandages and elevation) can be applied.

Common muscle bleed sites are the iliopsoas muscle (the front of the groin area), the forearm, and the calf. The most serious bleeds (external major cut, muscles bleeds, throat bleeds, stomach bleeds and head bleeds) can be life-threatening so needs an immediate medical attentions.

  • Are bruises dangerous?

Bruises are very common in children with hemophilia. A bruise is not usually cause for alarm, unless it is on the head or neck, has a hard time moving, the bruise hurts, the lump in the bruise gets larger or does not go away or if there is numbness or a tingling feeling along with the bruising. In any of these cases, a physician should be consulted.

  • What about other diseases?

Hemophiliacs are subjected to other diseases as a normal children. All the vaccinations should be given. If in case of any other diseases, doctor should be visited and you should not forget to mention your child has hemophilia. Certain medicines containing aspirin should be avoided such as ibuprofen.

  • Should I tell my parents if I have a bleed?

Yes. You should always tell your parents about any bleeds. they know better what is to be done to manage bleeds. Also some bleeds might require immediate medical attentions, before it gets more complicated.

  • Should I tell my friends and teachers that I have hemophilia?

As most of your time is spent in the school. It is best practice to let your friends and teachers know that you have hemophilia. Your parents can talk with the teachers too. In case you have a bleed or an injury in the school, your friends or teachers can inform your parents or take any immediate actions.

  • Should I be cautious?

Bleeds can happen with our without injury. Though certain actions or sports are known to cause bleeds, you can avoid them. Also while walking or doing any physical tasks, being cautious can prevent any possible injuries.

  • Can I play sports?

Yes. Care needs to be taken when choosing a sport. High contact sports such as football, cricket, boxing, karate should be avoided. Badminton, table tennis, swimming, cycling could be better option. Sports help build muscle and develop mental concentration and coordination. Strong muscles help protect someone who has hemophilia from spontaneous bleeds and joint damage.

  • What happens if I have bleeds when I have exam at school?

Schools can be flexible and helpful if they know about your hemophilia. They might reschedule your exams.

  • Can I pursue my dreams?

As long as you are passionate about your dreams, there is nothing that can stop you from achieving it. Getting regular treatments and taking proper precautions, you can live a normal life.

  • How do I tell difference between bleed and arthritis?

If you have had a lot of bleeding into a particular joint over many years, it is likely there will be a degree of arthritis there. Arthritis tends to be at its worst first thing in the morning and eases slightly as the day progresses and with movement. A bleed, even if it is not acute, gets gradually worse, more swollen and painful. If factor replacement is making no difference then it probably is arthritis.

  • I have had a lot of bleeds in the same joint recently. What is happening?

It sounds as though what you have is called a “target joint”. Once a joint has had a bleed it may take up to six weeks for the blood to be fully re-absorbed into the system. This is when it is most likely to bleed again because as the joint is healing more blood flows to the site and so a vicious cycle is set up.

  • Is factor concentrates enough to keep my joints and muscles healthy?

Factors are very important to stop the bleeds. But after the bleeds, joints and muscles are affected and becomes weak. Physiotherapy is very essential to main the mobility of the joints and elasticity and strength of the muscles. Also regular physiotherapy helps strengthen the muscle and strong muscles help protect someone who has hemophilia from spontaneous bleeds and joint damage.

  • Will prophylaxis help repair damaged joints?

Prophylaxis will not help repair joints that are already damaged. However, it will decrease the frequency of bleeding,may slow progression of joint disease and may improve quality of life.

  • I am having problems with finding veins, what can be done?

This is sometimes a problem in older people who have had many, many venepunctures over the years. It also can be because of poor health, hydration, obesity or lack of muscle tone. If you have tried to take measures in all these areas and cannot find a new vein, contact your hematologist to discuss the options of venous access devices such as a port-a-cath. This is a small box attached to a tube which is inserted under the skin and directly into a vein. It can then be readily accessed with a special needle. This does, however, have some complications so it should be discussed at length with your specialist,and only be considered if options are very limited.

  • I have blood in my urine.

Blood in the urine is medically called hematuria. It is a common occurrence in some people with hemophilia and usually seems to be for no reason at all. Sometimes the hematuria can be stopped by increasing the fluid intake to 3-4 liters per day and “flushing out” the system. If it continues, factor treatment will be required, but only do this with consultation with your hematologists. It is also important not to take antifibrinolytic medication such as Tranexamic acid as these can cause small clots which can block the urinary tract and cause intense pain.

  • Can I have other health problems?

Having hemophilia does not mean you are immune to other diseases. As you grow, there are chances of contaminating or developing other health issues. Getting regular health check ups is important. Doing regular exercises and taking care of diet intake is advised.