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Hemophilia - The way I see it...

In 1828 when Hemophilia got its name, no one knew how many people were affected, how far it would stretch, how it was contracted or how it would spread. It was primarily known by its visible impacts and the pain experienced from uncontrolled internal bleeding. Through the years, it has taken hundreds of dedicated researchers, physicians, nurses, parents, patients, and caregivers to make a difference. It has taken thousands of painful bleeds, tens of thousands of days, hundreds of thousands of hours, and millions of donors of blood to affect change for our community. Just 40 years ago, hemophilia was frequently referred to as the "crippling disease" with a shortened lifespan, and today it is a…

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 For people with haemophilia, most of the world is still in the dark ages

Like the Hindu deity Krishna, I was born with blue skin. My body bruised at the trauma of simply being held. And so the family arranged for a ritual to appease the gods. Haemophilia is a genetic blood disorder that makes it very hard for the body to stop bleeding. If your haemophilia is severe like mine, you bleed spontaneously, without an injury or known cause. A handshake once took me to A&E. To stop bleeding, you need clotting injections. In much of the developing world, these injections are available only to the chosen few. Multinational corporations, such as Pfizer and Baxter, make money selling drugs at high prices in low-income countries.

Articles of Interest

Voices of Hem A

Bringing together healthcare providers, a pharmacist, and a person living with hemophilia A to share their unique perspectives on the state of hemophilia A care, this video discusses unmet needs, hidden trade-offs, and the potential benefits of increasing shared decision-making

Betting on Designer Genes

Recently, teams of researchers in France and the United States have reported small successes. In the first, the group corrected an immune deficiency in two infants. In the other, the scientists injected viruses carrying the necessary gene into three people with hemophilia. A year later, two of them were producing a blood clotting factor that hemophiliacs lack. In principle, gene therapy has the potential to do more than cure diseases involving faulty genes.

Gene Therapy Shows Promise For Hemophilia, But Could Be Most Expensive U.S. Drug Ever

It's the latest promising development for gene therapy, which has finally started producing effective treatments for a variety of diseases after decades of setbacks. Several other experimental forms of gene therapy are also showing promise for hemophilia, including another type of the condition, known as hemophilia B.

Hemophilia: For the Love of Bleeding

In this segment, I will explain and simplify hemophilia for you down to the “need to know” essential information so when you are managing a hemophilia patient in the ED, like my son, you will know what to do.

Understanding Hemophilia A

Research is underway to develop new treatment approaches for people with hemophilia A and to help reduce the burden of frequent intravenous infusions.

Resources

Speak Your Hem Truth

Are you making trade-offs by compromising on bleed protection or ease of administration?

Hemophilia News Today

The condition is caused by a mutation in the F8 gene on the X chromosome that leads to a deficiency of a protein called factor VIII (FVIII). This deficiency impairs blood clotting, leading to prolonged bleeding after an injury, or spontaneous bleeding. While there currently is no way to cure hemophilia A, early diagnosis and regular factor replacement therapy can help prevent severe bleeding and long-term joint damage.

Louisiana Hemophilia Foundation

Hemophilia A, also called factor VIII (FVIII) deficiency or classic hemophilia, is a genetic disorder caused by missing or defective factor VIII, a clotting protein. Although it is passed down from parents to children, about 1/3 of cases are caused by a spontaneous mutation, a change in a gene. According to the US Centers for Disease Control and Prevention, hemophilia occurs in approximately 1 in 5,000 live births. There are about 20,000 people with hemophilia in the US. All races and ethnic groups are affected. Hemophilia A is four times as common as hemophilia B while more than half of patients with hemophilia A have the severe form of hemophilia.