- The World
Hemophilia Day 2017 is observed on April 17th. This year's
theme is "hear their voices".
- Every year,
popular landmarks and historical buildings are lit it up red to mark this day.
Sathyanarayanan, Secretary of the Hemophilia Society- Madras Chapter,
talks about ways to manage hemophilia, incidence and treatment available
in an exclusive interview with Medindia.
Hemophilia Day 2017 is celebrated to raise awareness about hemophilia, a
bleeding disorder. A small nick in the finger while cutting vegetables may be a
very minor incident for many people, however it can be tragic for a person affected with hemophilia
This is a genetic disorder that is characterized by the absence of the clotting
factor in the blood, which leads to uncontrolled bleeding in the event of an
injury or cut.
This condition is normally inherited
from the parents but about one-third of the patients are afflicted due to a
‘“With positive attitude, slight adjustments and an engaged lifestyle, one can cope with this condition (hemophilia).” – Mr.Sathyanarayanan.’
Incidence of Hemophilia
to the data provided by the World
Federation of Hemophilia
- In India, in
2011, about 14,718 patients reported having hemophilia, out of which
11,586 patients had hemophilia
to the data provided by the US Centers
for Disease Control and Prevention
- 1 in 5,000 live
births have hemophilia
- 20,000 people in
the U.S live with hemophilia in the US
Theme for World
Hemophilia Day 2017- Hear Their Voices
theme for this year's World hemophilia Day is "Hear Their Voices". It is dedicated to the millions of women and girls who suffer from
Light It Up Red
and landmarks, around the world, are lit up red to support the World Hemophilia
account of World Hemophilia Day 2017, Medindia conducted an exclusive interview
with Mr. Sathyanarayanan, Secretary, Hemophilia Society, Chennai Chapter.
What is the
prevalence of hemophilia in Chennai?
The Hemophilia Society - Madras Chapter has around 550 patients with hemophilia
who live in and around Chennai.
What is the
awareness level among people living here? Is there a local name or term used
for this condition?
The awareness level is not that encouraging either at the physician or at the
patient level. Mostly patients come to us only through word of mouth and who
have a family history. The society tries to create awareness programmes in the
government hospitals with the society's women group. Regarding any local name
to this disorder, long ago people confused this disorder with myth and
superstition. They assumed it is because of some evil spirit. However, these superstitions are now on
the decrease because of the awareness and the education.
How does a
parent detect hemophilia in a baby and what are the steps that can be taken to
prevent injury within the house?
The prevalence of hemophilia in India is 1
in 10,000 male birth
. Usually the family has a hemophilia history. Hemophilia manifests at an early age. Dark patches can be seen occasionally, which is a classical symptom for the
condition. As the child grows the symptoms become obvious.
Internal bleeds are seen in the joints and muscles. Bleeds in joints initially
leads to stiffness, decrease in range of
movement and in the long run becomes a target joint. A target joint bleeds
often, even spontaneously which leads to decrease in the activity level which
leads to disability. It is better to keep sharp objects such as scissors,
knives, pens and also objects like match boxes
and ear buds away from the child's reach.
Are children with hemophilia forced to stay at home? Will they be left out of
Long ago, this was a reason for the lack of
education in the hemophilia
community. However, things have changed considerably in the last decade. Children go to school like normal wards. But we
strictly warn patients to keep away from
impact sports as there are higher chances of
injury. Occasionally, children with hemophilia are forced to
compensate for their loss of attendance in some schools, as they take leave during
Do you provide
counseling sessions for parents to help them cope with this condition?
Yes. Apart from providing counseling, we also
provide psycho social counseling to the
patients. Hemophilia, is a rare bleeding
disorder which can be kept under watch by trying to accommodate. With positive
attitude, slight adjustments and an engaged lifestyle one can cope with this condition.
medication available to improve clotting in the blood? Will that help the child
lead a healthy and long life?
Hemophilia has no cure. But can be controlled with clotting factor
concentrates. The cost of these drugs is exorbitantly high. For a single
episodic treatment the cost can be the value of one gram of gold. The special
feature of hemophilia is the spontaneous
bleeding episodes. These bleeds occur in the joint and muscles without any apparent cause. A patient can bleed once in a week to several
days in a month. Hence, the cost of
treatment is very high. But with the support of the society, and the free
treatment in the government medical colleges a child can lead a healthy life.
How do people
register and what is the kind of support they will receive from your society?
Hemophilia society supports their registered patients with free doctor
consultation, physiotherapy, counseling session, subsidized treatment, and also
provides free treatment at times because of the economic condition of the
patient, among other factors. The
society also provides them with educational scholarships, extends financial
help in rehabilitation and so on.
Is there a
special diet that should be followed by people with hemophilia?
As such there are no restrictions on the
diet. However, from experience we
always caution our patients while
taking a non-veg diet (hard bones), as they can bruise and lead to a bleed. We also tell our patients
to control hot items like pickles which can irritate the stomach easily. As a
person with hemophilia is prone to
bleeding episodes, they are
recommeded painkillers to control pain which can irritate the
stomach. So, a spicy item like pickle can complicate the problem.
Can you tell
us some spheres where people with hemophilia have excelled?
Queen Victoria and Richard Burton. And
now a person with hemophilia
in Chennai is doing a research on the condition in United States in spite of all the pain and suffering during childhood.
When a person
with hemophilia is injured in an accident, how can he/she communicate to the
doctor about their impending condition?
We always carry an identity card which specifies our medical condition. The
card clearly states the do's and don'ts of the treatment.
How were you
motivated to become involved in the Hemophilia Society? Is there a personal
I am a 47 year old person with Hemophilia. During my school days, I used to get
admitted in CMC, Vellore for treatment. It was very painful. After my education
I joined a publication company. In the year 1998, I came across Hemophilia
Society - Madras Chapter. It was a turning point and I learnt more about the
disorder and understood the various needs of the hemophilia community.
Beginning as a volunteer, I went on to become
the Secretary and the Key-Person of the Chapter and Executive Committee Member
of Hemophilia Federation (India).
I started nurturing my dream about good
treatment for fellow sufferers and January 2010 was the beginning. We got an
appointment with the Health Secretary, Government of Tamil Nadu for a
presentation on hemophilia headed by Dr. Alok Srivastava of CMC, Vellore.
During that meeting we were able to sensitize the Government about the lack of
hemophilia care in the State. This led to further discussions in the following
months with the health authorities.
March 2010, the Government of Tamil Nadu announced a budget of Rs. 14.36 Crores
to procure drugs (Factor-VIII, Factor-IX, Von Willibrand Factor, Inhibitor
Factor and rF-VIIa) for the treatment of hemophilia in the State under the
Health Budget. Even though few states had announced allocation for buying drugs
earlier, Tamil Nadu
the first state
make free factors available in all the Government Medical Colleges and
Hospitals across Tamil Nadu in its Health Budget. We started doing CME
programmes for doctors, nurses and
paramedics. Thereafter, under the instructions
of Directorate of Medical Education, Hemophilia Clinics were opened in select
Medical Colleges and Hospitals for enrolling the patients. The factors were
procured by a tendering process and made available in most of the Medical
Colleges. This led to the treatment with free
factors by the Government doctors
. Centre for Excellence was also
established in Government Hospitals in Chennai. Our next goal is to sensitize
the government to extend the care to all the District government hospitals and
subsequently to the primary health centers at the grass root level. When that
happens our vision Hemophilia without disability; children free of pain
will come true.
What has been
your most memorable moment while working with the Hemophilia Society?
When we celebrated our 25th year, we
invited our past president Dr. A.P.J.Abdul Kalam for the function. That day was
a memorable day in my life. Born with a medical condition of this magnitude
with little support during childhood
to become a leader in the community and standing with a great teacher like Dr.
Kalam is by itself an achievement for me.
- Hemophilia Day 2017 - (https:www.wfh.org/en/whd)
- World Hemophilia Day 2017 - Lighting it up Red in 2017 - (http://www.hemophiliaworld.org/2016/12/world-hemophilia-day-2017-lighting-it-up-red-in-2017/)
- Types of Bleeding Disorders - Hemophilia A - (https:www.hemophilia.org/Bleeding-Disorders/Types-of-Bleeding-Disorders/Hemophilia-A)