World Hemophilia Day 2017- Exclusive Interview With Mr. Sathyanarayanan

The World 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 spontaneous mutation.

Incidence of Hemophilia

According 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 A

According 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

The 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 bleeding disorders.

Light It Up Red:

Monuments and landmarks, around the world, are lit up red to support the World Hemophilia Day 2017.

On account of World Hemophilia Day 2017, Medindia conducted an exclusive interview with Mr. Sathyanarayanan, Secretary, Hemophilia Society, Chennai Chapter.


Q. What is the prevalence of hemophilia in Chennai?

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Ans. The Hemophilia Society – Madras Chapter has around 550 patients with hemophilia who live in and around Chennai.

Q. What is the awareness level among people living here? Is there a local name or term used for this condition?

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Ans. 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.

Q. How does a parent detect hemophilia in a baby and what are the steps that can be taken to prevent injury within the house?

Ans. 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.

Q. Are children with hemophilia forced to stay at home? Will they be left out of sports?

Ans. 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 their episodes.

Q. Do you provide counseling sessions for parents to help them cope with this condition?

Ans. 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.

Q. Is there medication available to improve clotting in the blood? Will that help the child lead a healthy and long life?

Ans. 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.

Q. How do people register and what is the kind of support they will receive from your society?

Ans. 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.

Q. Is there a special diet that should be followed by people with hemophilia?

Ans. 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.

Q. Can you tell us some spheres where people with hemophilia have excelled?

Ans. 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.

Q. When a person with hemophilia is injured in an accident, how can he/she communicate to the doctor about their impending condition?

Ans. We always carry an identity card which specifies our medical condition. The card clearly states the do’s and don’ts of the treatment.

Q. How were you motivated to become involved in the Hemophilia Society? Is there a personal story?

Ans. 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.

By 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, was the first state to 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.

Q. What has been your most memorable moment while working with the Hemophilia Society?

Ans. 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.

References:

1. Hemophilia Day 2017 - (https://www.wfh.org/en/whd)
2. 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/)
3. Types of Bleeding Disorders - Hemophilia A - (https://www.hemophilia.org/Bleeding-Disorders/Types-of-Bleeding-Disorders/Hemophilia-A)

Source-Medindia