Living With Haemophilia: A Cause We Must Fight Together
Imagine getting a cut, and the blood doesn’t stop oozing out. This is what people with haemophilia have to go through.
For many years, haemophilia was shrouded in stigma and misunderstanding, leading to many people with the condition being ostracized and marginalized. However, in the 21st century, attitudes towards haemophilia are beginning to change.
On the occasion of World Haemophilia Day, let’s get an understanding of what it is like to live with haemophilia and how people with the condition navigate their lives around it.
What is Haemophilia?
Haemophilia is a genetic disorder that affects the blood's ability to clot properly. People with haemophilia have a deficiency in one of the clotting factors, which can lead to prolonged bleeding and other complications. In the majority of cases, it is a genetic disease - one inherits it and starts showing symptoms of it from infancy itself. It is a lifelong condition. There are two common types of haemophilia:
Type A: This type is the most commonly and severely occurring haemophilia. It occurs as a result of not having enough clotting factor VIII.
Type B: This occurs because of a deficiency in clotting factor IX.
Unexplained and excessive bleeding, which may occur after minor injuries, surgery or dental work
Prolonged bleeding after a cut or injury
Pain and swelling in the joints, especially the knees and ankles, which may be a sign of internal bleeding
Blood in urine or stools
Nosebleeds that are difficult to stop
Bleeding into the muscles, which can cause swelling, pain and tightness
Bleeding into the brain, which can cause severe headaches, vomiting, and seizures.
Over 1.36 lakh Indians suffer from haemophilia, and it is estimated that around 75% of these cases are undiagnosed.
The severity of haemophilia can be classified into mild, moderate, and severe based on the amount of clotting factors present in the blood.
Advances in Treatment
One of the key factors that have helped to break the stigma around haemophilia is the development of better treatments. In the past, people with haemophilia had very few options when it came to managing their condition.
Today there are a variety of treatments available, including clotting factor replacement therapy, gene therapy, and new medications that can help prevent bleeding episodes.
The development of new treatments has made a significant impact on the quality of life for those who are able to access them. We’ve put together a ready reckoner of medicines if you or anyone you know suffers from the condition - having informed knowledge about this could come in handy and save someone’s life.
Desmopressin: This hormone helps to stimulate the body to release more clotting factors.
Emicizumab (Hemlibra): Excessive bleeding caused by haemophilia A can be reduced with this drug.
Clot-preserving medications: These medications help in the prevention of breaking down of clots.
Fibrin sealants: These need to be applied directly on wounded areas for clotting and healing.
Physical therapy: This reduces the signs and symptoms of internal bleeding that has damaged your joints.
Education and Awareness
Another factor that has helped to break the stigma around haemophilia is increased education and awareness. In the past, there was very little information available about the condition, and many people were misinformed about what it was and how it affected people.
Off-late, there are many resources available that can help people learn more about haemophilia and how to manage it. This includes online support groups, educational materials, and advocacy organizations that work to raise awareness and promote education about the condition.
The Role of Advocacy
Advocacy has played a significant role in breaking the stigma around haemophilia. Organizations around the world work to promote awareness, provide support to people with the condition, and advocate for better treatment options.
According to the European Haemophilia Consortium, advocacy efforts have helped to improve access to treatment, increase awareness of the condition, and reduce discrimination against people with haemophilia. This work is ongoing, but the progress that has been made so far is significant.
Living with Haemophilia in the 21st Century
Despite the challenges that people with haemophilia face, many are living fulfilling lives in the 21st century. With better treatment options and increased awareness, people with haemophilia are able to manage their condition and participate in a wide range of activities. Here are some suggestions from Kenko:
Stay active: Exercise can help keep your muscles strong and healthy, which can help prevent bleeding into the joints. However, be sure to talk to your doctor before starting any new exercise program.
Manage bleeding episodes: If you experience a bleeding episode, it's important to seek medical attention immediately. You may also need to administer clotting factor treatments at home, as directed by your doctor.
Take preventive measures: Prophylactic treatment, which involves regular infusions of clotting factors, can help prevent bleeding episodes from occurring in the first place.
Avoid certain medications: Some medications, such as aspirin and ibuprofen, can increase the risk of bleeding, so it's important to talk to your doctor before taking any new medications.
Maintain a healthy diet: Eating a balanced diet that includes plenty of vitamins and minerals can help keep your body healthy and strong.
Get regular check-ups: It's important to have regular check-ups with your doctor to monitor your condition and catch any potential issues early on.
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