In the United States, more than 60,000 people suffer from bleeding disorders. Over 24,000 of them suffer from hemophilia.
Our blood contains certain proteins, or “clotting factors,” that aid in blood clotting. When you cut yourself, these factors help your body slow down the loss of blood.
If the body does not produce enough of either “factor 8” or “factor 9,” which prevents the blood from properly clotting, it results in hemophilia, an inherited bleeding disorder.
Thanks to breakthrough treatments, people who suffer from bleeding disorders are able to live longer as a result of improved, newer treatments that have been developed over the course of the last 30 years.
Despite the fact that these conditions are uncommon, the media and the internet unfortunately can facilitate the dissemination of false information. This article aims to explore the facts behind some of the most prevalent myths. Let’s have a look.
- Myth: Patients with hemophilia are unable to engage in sports or live a normal life.
Fact: As with healthy individuals, those with bleeding disorders are typically encouraged to participate actively in sports. It is crucial for hemophilia patients to engage in any kind of daily physical activity in order to improve joint health, build muscle strength, and keep a healthy weight, allowing them to live longer and healthier lives. The best way to choose the right sports or activities is to consult healthcare providers
- Myth: Outgrowing hemophilia is possible.
Fact: Although hemophilia cannot be cured, there are treatments that can lessen its dangers or severity. It is a genetic disorder that makes it hard for blood to clot, and people with it have to deal with it for the rest of their lives. Nevertheless, researchers are making every effort to develop novel treatments for its symptoms.
- Myth: Hemophilia is not the same for everyone.
Fact: There are two kinds of hemophilia: A and B, so patients with hemophilia may have any one of them. Both of these types are categorized according to the absence of a specific type of clotting factor and have distinct symptoms. Patients with Hemophilia B have a deficiency of clotting factor IX and are more seriously ill, whereas patients with Hemophilia A have low levels of clotting factor VIII.
- Myth: In case of injury or any treatment that requires a knife, bleeding disorders sufferers may die.
Fact: A cut, wound, or surgery would cause prolonged bleeding rather than faster bleeding for people who lack clotting factors (including Hemophilia). Patients with minor cuts and scrapes who receive routine first aid tend to bleed, necessitating no special medications. Additionally, people with hemophilia are permitted to use sharp tools like scissors and knives in their daily lives. However, the hemophilia condition can pose a serious threat to the organs and even cause tissue damage if there is any internal bleeding within the skull or in the soft tissue surrounding internal organs.
- Myth: Family members are always affected when someone has a bleeding disorder.
Fact: Any bleeding disorder or hemophilia frequently runs in families. Hemophilia can skip a generation due to the patterns of genetic inheritance, but not always. This is due to the fact that the gene mutation that causes hemophilia can happen on its own. However, up to one-third of people in the family may be carriers or unaffected. The disease may be mild for some family members, and they may not even be aware that they have it or are at risk of bleeding, especially if they have never had a cut or surgery.
- Myth: Females are immune to hemophilia and other bleeding disorders.
Fact: Since hemophilia is an X-linked disorder, the majority of people who suffer from it are men and boys. However, some women and girls carry the mutation and are affected as well. Additionally, both men and women are affected by other bleeding disorders like Von Willebrand disease.
- Myth: Hemophilia affects people from royal families.
Fact: It is common knowledge that Queen Victoria of England was a carrier of hemophilia. She did transmit the condition to a number of European royal families from the middle of the 1800s to the late 1800s. However, the medical community has been aware of hemophilia for nearly 2000 years. The vast majority of people who suffer from hemophilia are unable to trace their ancestry back to a royal family.
- Myth: HIV/AIDS can be caused by hemophilia.
Fact: Around 8,000 hemophiliacs contracted HIV in the early 1980s after consuming contaminated clotting factor made from HIV-contaminated blood donations. The United States of America has mandated that all blood donations be tested for HIV since 1985, and there have been no reported cases of the virus in the United States associated with the use of clotting factor since 1986. Currently, clotting factor is much safer. Today, “recombinant,” or manufactured clotting factor, which contains little to no human blood, is used by many people with bleeding disorders.
- Myth: A bleeding disorder prevents a woman from having children.
Fact: It is possible for women with bleeding disorders to have children. Women with Von Willebrand disease frequently have normal pregnancies without issues. Nonetheless, a woman should discuss any individual health-related pregnancy risks with her obstetrician and hematologist.
- Myth: Joint problems will eventually affect everyone with hemophilia.
Fact: The good news is that many people with hemophilia today will be able to prevent long-term joint injury and crippling arthritic changes, thanks to safer and more readily available clotting factor concentrates.
- Myth: The degree of deficiency is the same for everyone with hemophilia.
Fact: No. Depending on the particular hereditary change or transformation in a given family, the degree of deficiency differs for everyone with hemophilia.
- Myth: Hemophilia is characterized by only external bleeding, such as from a cut or graze.
Fact: Internal bleeding can also occur spontaneously in hemophilia patients. The most common joints affected are the knee, ankle, and elbow.
- Myth: The lifespan of hemophilia sufferers is short.
Fact: Today, individuals with hemophilia can anticipate a life expectancy that is close to normal with proper management.
- Myth: Hemophilia can be treated with peanuts, iron, and some vitamins.
Fact: Hemophilia does not have a cure at this time. The only available treatment at this time is replacement therapy for the clotting factor VIII that is missing.
- Myth: I don’t need to treat or worry about my hemophilia as long as I’m careful.
Fact: It is essential to seek treatment from a hematologist if you show symptoms of a bleeding disorder. A bleeding disorder can cause serious problems for the organs and joints if it is not treated. The best way to prevent a bleed or lessen its severity is to take the right medication as prescribed by your doctor and combine it with healthy eating and exercise.
The internet and statistics can be very misleading when it comes to symptoms or numbers. If you need medical advice, a diagnosis, or treatment right away, you should talk to a doctor right away. Connect with DLW for blood chemistry testing service to diagnose clotting disorder like hemophilia. Timely diagnosis can help to manage the symptoms caused by the condition to achieve a healthy and peaceful life.