Hemophilia

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A hemorrhagic disease is really a group of diseases. Hemorrhage means that you start bleeding more easily and that you can bleed longer than a person who does not have a hemorrhagic disease. This is because the blood lacks one or more substances needed for it to live. Hemorrhagic disease is usually a hereditary disease.

Symptoms of hemophilia

The symptoms of hemophilia can differ between the different types of bleeding disorders.

For example, you may have nosebleeds, bleeding gums, heavy periods and bruising on the skin.

You may also have leg and arm pain and joint pain if it bleeds into the joints and muscles.

When and where should I seek care?

Seek treatment for hemophilia at a health care center if you suspect you have a bleeding disorder. You can contact many receptions by logging in.

Treatment for hemophilia

There are syringes with medicines that contain the substances that are missing in the blood. You can take the syringes at home yourself. You can also get the drug as a nasal spray if you have a mild form of hemorrhagic disease. You can also take medicines if needed, for example, if you are going to pull out a tooth or have surgery.

Children and hemophiliacs

In some cases, small children can receive medication through a box that is operated under the skin. It is good if you as an adult talk to the doctor about how you can protect your child from harm. This could be, for example, by allowing the child to wear a helmet or to have knee protection.

What happens in the body?

Hemorrhagic disease is a collective name for some unusual diseases, which means that you start bleeding more easily for example injuries and then bleed longer than a healthy person. This is because the blood lacks one or more substances needed for it to live. The severity of the disease depends on how much blood can be delivered. Hemophilia is congenital and hereditary.

Von Willebrand’s disease

There are many types of bleeding disorders. The most common form is von Willebrand’s disease, which is found in three different types, mild – type 1, moderate – type 2 and severe – type 3. Von Willebrand’s disease is found in both women and men and is most common in a mild form. The disease is hereditary.

Hemophilia A and B

Other forms of hemophilia are hemophilia A and B, which are also found in varying degrees of difficulty. The various levels of difficulty are mild, medium or severe.

The gender the child gets depends on the body’s appearance and set of sex chromosomes. The sex chromosomes are X and Y. A child who has two X chromosomes is assigned to the gender woman. A child who has an X chromosome and a Y chromosome are assigned the gender.

The trait for hemophilia is located on the X chromosome. Men get hemophilia if the X chromosome has a predisposition to the disease. For hemophilia to occur in women, both X chromosomes must have a predisposition to hemophilia. It’s unusual. It is more common for men to have the disease.

Women who have genetic relatives with hemophilia can go through an investigation to find out if they carry the strain. If you want to do an investigation, contact one of the hemophilia centers in Malmö, Gothenburg or Stockholm.

Women who have only one X chromosome with the tendon may have hemorrhagic disease but usually in a mild form.

Investigations

Often a blood test is taken on newborn boys in families with hemophilia. In cases where the disease is not in the family since before, severe bleeding illness is usually detected when the child is about nine months. When the child becomes more mobile and falls and strikes, children with the hemorrhagic disease receive more bruises than children who do not have hemophilia. In addition, children with the hemorrhagic disease can have joints and muscles.

In the mild or moderate form of the hemorrhagic disease, it is sometimes not detected until later in life. Then the disease can be detected by bleeding long after, for example, an operation or by pulling out a tooth. The disease can also be detected if you bleed long after a wound on a mucous membrane in the nose or mouth, for example.

The diagnosis is made by means of a blood sample that is sent to a coagulation laboratory. In some cases, you may also be allowed to do a DNA test. This is done at one of the three coagulation centers in Gothenburg, Malmö or Stockholm. 

What can I do for myself?

It is good if you take care of your teeth extra carefully if you have the hemorrhagic disease. It can reduce the risk of bleeding in the gums.

Some people with hemorrhagic bleeding in joints and muscles. It can reduce mobility and make you feel stiff. Exercise and physiotherapy can help with the rigidity and do so that you can maintain your mobility.  

Living with hemophilia

Most people with hemophilia can live as usual because there are drugs that reduce or prevent bleeding. What you need to keep in mind is that you need to be extra careful not to hurt yourself.

For example, if you get a blow to the head or abdomen, or need surgery, you need treatment for the actual bleeding that occurs so that it does not become life-threatening.

Avoid certain medicines

You who have the hemorrhagic disease should not use medicines with acetylsalicylic acid or so-called anti-inflammatory painkillers, NSAIDs without consulting your doctor. This is because these drugs can impair the blood’s ability to deliver. Contact your doctor if you are unsure about which drug to choose.  

Bleeding Risk Short

You should always carry a so-called bleeding risk card if you have a bleeding illness. The card says what kind of hemorrhagic disease you have and how serious it is. There are also telephone numbers for one of the country’s three coagulation centers. They are located in Stockholm, Malmö, and Gothenburg. In emergency situations, the coagulation call should be contacted at the reception you belong to. The number of the call is on the bleeding risk card. 

Influence and participate in your care

You can seek care at any medical center or open specialist clinic you want throughout the country. Sometimes a referral  to the open specialized care is required.

You should understand the information

In order for you to be involved in your care and treatment, it is important that you understand the information you receive from the healthcare staff. Ask questions if you don’t understand. For example, you should receive information about treatment options and how long you may have to wait for care and treatment.

Children should also be involved in their care. The older the child, the more important it is.

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