WORLD HEMOPHILIA DAY

World Hemophilia Day is a special opportunity for everyone in our community to come together and support those with hemophilia and other inherited bleeding disorders. On April 17, 2017, the tradition of “Lighting it up red” will continue and people in cities around the world will light up major landmarks in red to show support for the global bleeding disorders community.

Supported by the World Federation of Hemophilia (WFH), hemophilia awareness day was first established in 1989. The date of 17th April was chosen to honor Frank Schnabel the founder of WFH, whose birthday falls on the same date.

Hemophilia is usually detected at an early stage in life. But, at times, it may get diagnosed only at the time of a surgery or a major injury. A simple blood test can detect hemophilia before, during or even after birth. A person suffering from hemophilia can live a healthy lifespan. Although the disease cannot be cured, yet it can be managed with regular infusions of deficient clotting factors.

Hemophilia is a condition in which bleeding is prolonged. Hemophilia is a condition present from birth and is normally inherited; you can’t ‘catch’ hemophilia or pass it onto others. In some rare instances, hemophilia may develop later in life (typically affecting people in the 50+ age group).

Hemophilia is a hereditary genetic condition that affects the blood’s ability to clot. In case of an injury, people with hemophilia bleed more in comparison to people without hemophilia. It is more likely to affect males than females. It occurs in two forms- Hemophilia A or Hemophilia B depending upon the deficiency of clotting factor VIII or IX. Hemophilia A is the most common form of the disorder, present in about 1 in 5,000–10,000 births. Hemophilia B in comparison affects about 1 in 20,000–34,000 births.

 

Themes for Hemophilia:

PRESENT 2017 THEME IS “HEAR THEIR VOICES”.

2016 Themes -“Treatment for All, the Vision of All”

2015 Theme – “Building a family of support”

2014 Theme – “Speak out. Create change”

2013 Theme – “Close the gap”

2012 Theme – “Close the gap”

2011 Theme – “The Many Faces of Bleeding Disorders: United to Achieve Treatment for All”

2010 Theme – “The Many Faces of Bleeding Disorders – United to Achieve Treatment for All”

2009 Theme – “Together, We Care”

2008 Theme – “Count Me In”

2007 Theme – “Improve Your Life!”

 

Symptoms of Hemophilia

• Tendency to bruise easily
• Nosebleeds that do not stop easily
• Excessive bleeding during dental procedures, like root canal therapy, tooth extraction, etc.
• Painful or swollen joints
• Blood in urine
• Uncontrolled bleeding after an injury, accident, surgery, or even dental process
• Unjustified bleeding inside the body
• Internal bleeding in the knees, joints, elbows
• Red spots on the skin
• Bleeding can also be witnessed in the brain which can be fatal if not treated immediately.

 

 

 

 

 

 

When a person without hemophilia bleeds, normal levels of clotting factor, a protein in the blood, causes the blood to clot and stops the bleeding. However, hemophiliacs (people with hemophilia) have lower levels of clotting factor in the blood and bleeding continues for much longer periods.

Success story:

Dr. Srinivas

With severe hematoma due to Hemophilia, he got his first treatment at NILOFER Govt. Children’s Hospital & you may find it surprising that now he is serving as junior Doctor in the same hospital. It’s a miracle that in Hyderabad chapter of Hemophilia Federation with no support and proper infrastructure he have been able to survive and come out successfully. The journey to become doctor was not at all easy and one can guess how difficult it is in India to achieve this feat.

He belongs to a middle class family. His father is a police constable and mothers a primary school teacher. He has an elder sister and a younger brother. His parent’s monthly income was just enough for meeting our daily needs.  In his childhood days when he used to get hurt while playing, there wasn’t enough money with his parents to buy Factor VIII and his father used to give his own blood, as they both have same blood group. This happened several times.

By birth he was diagnosed with <1% of factor VIII level (a severe hemophiliac, where more than 20 times being infused with wet products). The availability of Factor VIII assisted him to reduce pain with frequent infusions. It really takes lots of courage and guts to inject in the veins with own hands when the near & dear ones are not around.

It is not common to have knee, elbow & shoulder joint frequent bleeds. Frequent knee heamorthroses made his right knee cripple at the age of 10 yrs., adding more pain and disability and further making his life more uneasy. On an average yearly 150 to 170 times his joints bleed, making the exams times more tense and nervous. The tension of doing well in exams added more mental strain & made him to bleed more frequently.

From his childhood, he wanted to become a professional doctor and study more about hemophilia. This urged him to become a doctor overcoming all challenges. His will power and the support of his family, schoolmates and friends helped him confronting all hurdles. In his school days, frequently he used to suffer from knee bleeds making him unable to complete the studies. During that time his friends & teachers helped me a lot.

In the junior college education which is a door step to join medicine, it became more severe and he had to cope-up with serious studies to achieve medical seat bearing the pain, sleepless nights, over stress, pressure from the tutors etc. All these memories make him feel great/proud for having crossed the challenging past. He got admission in Osmania medical college and the days used to be very hectic with lots of pressures to clear the annual exams.

The tension for examination & studies made him to bleed more frequently & he use dot writhe in pain. Silently he suffered but never revealed his agony to his professors or friends. Getting favors or sympathy makes him uneasy and irritating. He never wanted to get any kind of sympathy from any one. A common person suffering small injuries, fevers and pains can get relief with common medications, but he cannot take a pain killer easily. He has to depend on only “CROCIN” tablet which relieves temporarily.

The life is a curse for some people. Inspite of all hurdles but he have done it. Now he is a doctor and confident of treating patients with hemophilia in Hyderabad.

 

References:

https://www.nhp.gov.in/World-Haemophilia-day_pg

http://www.whathealth.com/awareness/event/worldhemophiliaday.html

http://timesofindia.indiatimes.com/life-style/health-fitness/health-news

http://www.altiusdirectory.com/Society/world-hemophilia-day.php

http://www.hemophilia.in/index.php/15-hemophilia-wiki/36-real-life-stories