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Hemophilia is a rare genetic disorder that impairs the blood’s ability to clot.
As a result, even minor injuries can lead to prolonged bleeding.
Hemophilia primarily
affects males due to its X-linked recessive inheritance pattern.
It is characterized
by a deficiency in certain clotting factors, leading to excessive bleeding in both
internal and external areas of the body.
Hemophilia has been documented since ancient times, but the disorder was
not well understood until the 19th century.
The first known written reference
to hemophilia came in 1803, when John Conrad Otto, an American physician, described a
case of bleeding disorder in a family.
However, the term "Hemophilia" itself was coined
later in 1828 by the German physician Johann Lukas Schönlein.
It was recognized as a hereditary
condition, primarily affecting males, passed down through generations.
In the early 20th century, medical advancements led to the identification of the two major types
of hemophilia : Hemophilia A (deficiency of Factor VIII) and Hemophilia B (deficiency of Factor IX).
These discoveries provided better diagnostic and treatment options.
Hemophilia is a rare condition, with an estimated global prevalence of about 1
in 5,000 male births.
However,
the actual number of cases worldwide is hard to determine because of underreporting, especially in developing
countries.
It is more commonly found in males, while females are typically carriers of the disorder.
According
to the World Federation of Hemophilia (WFH), there are more than 400,000 people living with hemophilia worldwide,
although this number might be an underestimation.
Hemophilia affects individuals across all racial and ethnic groups. However, the availability of care and treatment
can vary significantly by region, with some countries having better healthcare infrastructure and access to
therapies than others.
The risks associated with hemophilia are primarily related to uncontrollable bleeding. People with hemophilia are at risk for:
Without injury, bleeding can occur in muscles, joints, and organs, leading to pain, swelling, and potential long-term damage, especially to joints.
This is the most dangerous form, where bleeding into the brain or internal organs can be life-threatening.
Repeated bleeding into joints can cause arthritis, reduced mobility, and severe pain.
Historically, patients with hemophilia were at risk of blood-borne infections like HIV and hepatitis due to the use of contaminated clotting factor concentrates before the screening of blood products became standard.
Recent developments in gene therapy aim to provide a potential long-term cure by delivering a functional copy
of the defective gene to patients’ cells, allowing the body to produce the missing
clotting factor naturally.
Clinical trials are ongoing, and this could transform the future
of hemophilia treatment.
Dr. John Conrad Otto of Philadelphia identified hemophilia as a hereditary bleeding disorder that only affected males.
The term "hemophilia" was first used at the University of Zurich.
Queen Victoria of England passed the hemophilia A gene to several European royal families.
The first successful medical treatment for hemophilia was a whole blood transfusion that cured an 11-year-old boy.
Doctors discovered that adding platelet-free plasma, called "anti-hemophilic globulin", could correct clotting problems.
Dr. Pavlosky identified hemophilia A and hemophilia B as two distinct diseases.
Dr. Judith Graham Pool discovered that cryoprecipitate contained enough factor VIII to control severe bleeding . The factor VIII protein was first discovered in 1937, but it wasn't until 1979 that it was molecularly identified. The gene for factor VIII was cloned in 1984, which led to the development of recombinant factor VIII (r factor VIII):
Factor IX was discovered as the factor deficient in hemophilia B
Arthur Bloom defined the role of factor VIII in hemophilia A
Factor VIII was purified to homogeneity
The availability of r factor VIII, along with viral inactivation and better screening technology, revolutionized the treatment of hemophilia . Today, most patients with hemophilia worldwide receive r factor VIII products.
This white paper introduces HemophiliaCoin, a cryptocurrency dedicated to supporting individuals affected
by hemophilia worldwide.
Hemophilia is a genetic bleeding disorder
characterized by the deficiency
of clotting factors, leading to prolonged bleeding episodes.
Global prevalence estimates suggest
that over 1,125,000 men have hemophilia, with approximately
418,000 experiencing
severe forms of the disorder.
HemophiliaCoin aims to leverage blockchain technology to create a transparent and
efficient donation system, ensuring
that 5% of all donated funds are allocated directly to the treatment and support of hemophilia
patients across various countries.
The World Federation of Hemophilia's Annual Global Survey 2021 reported a total of 233,577 identified individuals with hemophilia across 118 countries.
Despite advancements in medical science, many hemophilia patients, especially in low- and middle-income countries, lack access to adequate treatment and care.This disparity is often due to limited resources, lack of awareness, and insufficient funding.
HemophiliaCoin is a blockchain-based cryptocurrency designed to facilitate donations towards hemophilia care globally By utilizing blockchain technology, HemophiliaCoin ensures transparency, security, and efficiency in the allocation of funds. A key feature of HemophiliaCoin is that 5% of every donated amount is directly channeled to support hemophilia patients worldwide.
Development of HemophiliaCoin platform and smart contracts.
Launch of HemophiliaCoin and initial donation campaigns.
Partnerships with hemophilia organizations and treatment centers.
Expansion to include other bleeding disorders and related initiatives.
Approximately 33,000 males
Over 19,000 identified patients.
Around 8,000 individuals.
Approximately 13,000
identified patients.
Over 12,000 individuals.
