World Hemophilia Day | Care for "glass people" and make love not rare!

April 17, 2024 is the 36th "World Hemophilia Day", with the theme of "Understanding Bleeding Disorders, Active Prevention and Treatment"

What is hemophilia?

Hemophilia is a group of inherited bleeding disorders caused by a lack of clotting factors. Hemophilia is divided into hemophilia A and hemophilia B, with hemophilia A being the most common.

Hemophilia A is caused by a deficiency of coagulation factor VIII, and hemophilia B is caused by a deficiency of coagulation factor IX. The severity of bleeding and complications in patients is related to the level of coagulation factor activity.

Why are hemophilia patients also called "glass people"?

Because glass is very fragile and it is very fragile, it may break if you accidentally hit it. Therefore, people with hemophilia are particularly afraid of bumps and bumps. This is a very serious bleeding disease. If there is a slight scratch or bruise, the patient may bleed more than once, and in severe cases, death may occur. That is why people often call them hemophilia glass people.

What are the symptoms?

The main symptom of hemophilia is bleeding tendency, including the following aspects:

Skin and mucous membrane bleeding: Hemophiliacs often experience subcutaneous hemorrhage, ecchymosis, purpura and other skin and mucous membrane bleeding symptoms. These symptoms are usually caused by the rupture of small blood vessels.

Joint bleeding: People with hemophilia are prone to joint bleeding, especially after exercise or injury. This bleeding can cause joint swelling, pain, and limited movement.

Muscle bleeds: People with hemophilia may also experience muscle bleeds, which can present as muscle pain, stiffness, and swelling.

Internal bleeding: Severe hemophilia patients may experience internal bleeding, such as brain bleeding, gastrointestinal bleeding, etc. This bleeding is very dangerous and may be life-threatening.

In addition to the above main manifestations, hemophilia patients may also experience other symptoms, such as fatigue, anemia, fever, etc. These symptoms may be related to anemia and infection caused by bleeding.

It should be noted that different types of hemophilia may have different symptoms. For example, patients with hemophilia A are more likely to experience joint bleeding, while patients with hemophilia B are more likely to experience muscle bleeding. Therefore, if you suspect that you or your family members have hemophilia, you should seek medical attention for diagnosis and treatment in a timely manner.

How is hemophilia inherited?

Hemophilia is an X-linked recessive inheritance. The onset of hemophilia is related to gender. Males are generally affected, while females are more likely to be carriers of the disease gene.

Hemophilia patients often develop the disease at a young age and do not necessarily have a clear family history. Joint swelling and pain are one of the common symptoms.

Children, especially male children, who have repeated unexplained joint swelling and pain and movement disorders, especially those that occur after activity, should be taken seriously and seek medical attention promptly.

How to treat it?

Preventive treatment is the first choice for children with hemophilia, and early, continuous, individualized and standardized treatment is essential.

Preventive treatment : also known as regular replacement therapy, is regular replacement therapy before bleeding to ensure that coagulation factors are maintained at a certain level to prevent bleeding and joint damage and reduce the disability rate.

It is recommended that patients with severe hemophilia receive preventive treatment.

The treatment strategy and goal of hemophilia is to effectively prevent and treat bleeding and related complications. The key to treatment is early, continuous, individualized and standardized treatment to improve prognosis and reduce disability rate.

Coagulation factor replacement therapy is the most effective measure to stop and prevent bleeding.

Hemophilia is congenital and lifelong, and there is currently no mature cure.

Coagulation factor replacement therapy is the main approach, and prevention of post-injury bleeding, especially intracranial hemorrhage, is extremely important.

Replacement therapy : Replacement therapy is divided into on-demand treatment (emergency infusion of coagulation factors after bleeding) and preventive treatment (regular infusion of coagulation factors before bleeding).

How to prevent it?

1. High-risk groups should actively receive genetic counseling, genetic testing, prenatal diagnosis and other services before pregnancy and before delivery.

High-risk groups: hemophilia patients, carriers of the pathogenic gene, and couples with a history of pregnancy or family history of hemophilia.

2. Families who are at risk of having a child with hemophilia can choose preimplantation genetic testing technology to assist pregnancy.

Everyone is the first person responsible for their own health. As long as they have regular prenatal checkups, pregnant mothers and fathers will have healthy and lovely babies.

(The pictures in this article are from the Internet)