Patients with hemophilia A in Pakistan's silent pain

Despite the efforts of NGOs, Pakistan faces a severe lack of hemophilia management in both the public and private sectors.

KARACHI:

Ahmed was in sixth grade when he fell at school and began bleeding heavily.

He started to get nosebleeds, sometimes in the middle of a regular school day,
which made him feel like he wasn't like the other kids. At different times,
his joints would damage and expand. Even though he was diligent and bright,
he began to miss school more frequently,
which caused him to fall behind in his studies.

His folks were constantly stressed. Despite the fact that it had nothing
to do with him,he was the source of their stress. Since Ahmed had
hemophilia - an uncommon a
cquired illness with no fix.

In its most basic form, hemophilia is a serious bleeding disorder
in which a person's blood does not properly clot, resulting in uncontrolled bleeding.
In a solid individual, proteins assembled coagulation factors work to
shape a blood coagulation and assist with halting dying. A clotting factor
known as Factor VIII is either absent or insufficient in people with hemophilia A,
preventing their blood from properly clotting. The most prevalent form
of hemophilia, hemophilia A, affects 75% of children.

Bruising is one sign of hemophilia; bleeding into the muscles and joints, which,
if left untreated, can result in chronic pain, swelling, and stiffness;
controlling women's menstrual or childbirth bleeding, as well as
controlling women's excessive menstrual or childbirth bleeding. Joint bleeding is
more frequent and severe in severe hemophilia, which has the potential to be
life-threatening. Individuals with extreme hemophilia A likewise experience
unconstrained dying. It significantly lowers the quality of life not only of those
affected but also of their loved ones, friends, and caregivers on a psychosocial level.
The objective for the executives of hemophilia An is to wipe out all preventable
drains paying little mind to illness seriousness. Prophylaxis is a deterrent,
standard treatment with the intent to forestall drains and permit individuals
with hemophilia to have dynamic existences and accomplish a personal satisfaction
equivalent to non-hemophilic people.

Pakistan is a nation confronting a large group of critical difficulties
in its medical services environment. Access to hemophilia diagnosis
and treatment is one such obstacle. There are approximately 20,000 Hemophilia
A patients in Pakistan, but only 3,500** are officially diagnosed.
Both in the public and private sectors, hemophilia management is
severely lacking, and full-dose prophylaxis is still almost nonexistent.
Private Patient Welfare Societies—small-scale private NGOs in major
cities that offer hemophilia patients services from diagnosis to patient
counseling—provide treatment and care. Over the past two decades, these
organizations have steadfastly supported patients with hemophilia.
However, despite all of their efforts, hemophilia continues to be a
neglected disease that sits on the margins of a health landscape that is already fragile.
Because the number of people affected shouldn't affect how a disease is treated,
much more work needs to be done to ensure that adults as well
as children like Ahmed have access to the appropriate care.

*WFH Rules for the Administration of Hemophilia, third Version, 2020
**in light of accessible information and obtained bits of knowledge
Bilal Ahmed is the chief executive officer of SPEAK Trust, a non-profit that works
to address issues related to migrants' human rights, HIV, gender-based violence,
and public health disparities. All realities and data are the sole liability of the essayist