Not just live, live it full – World hemophilia day- April 17, 2015

“In three words I can sum up everything I’ve learned about life: it goes on.” ― Robert Frost

Hemophilia- a rare genetic disorder in which blood doesn’t clot normally due to lack of clotting factors. Because of this, when a person with hemophilia gets a large cut or suffers internal injuries, he’ll bleed for a longer time and have difficulty healing.

How prevalent is hemophilia?

1. A child born with hemophilia will have it all its life.
2. About 15% patients have Factor – IX deficiency (Christmas disease).
3. Rest has Factor VIII – deficiency (Classical hemophilia).
4. Worldwide incidence of hemophilia is estimated to be more than 400,000 people.
5. Around 1300 children born in India every year are hemophilic.
6. There are 50,000 patients with severe hemophilia A at present.
7. Males have 50% chance of getting disease while females have 50% chance of carrying the disease.

How your hemophilic child is being treated in Indian Society?

1. Indian schools refuse admission to hemophiliac children due to medical emergencies and complications.
2. Condition of patient affects the whole family because of fear, anxiety, confusion and guilt.
3. As women are the carrier of hemophilic gene, they suffer more due to criticism from family and hemophilic child.

How parents should help their child with hemophilia?

1. Hemophiliac patient and their family should fight together against hemophilia.
2. Hemophilia should not define his or her identity.
3. Parents should accept it in a short period because being in denial for a long time can affect the child’s well being.
4. Parents should not withdraw themselves from their own child, relatives, friends and society.
5. As hemophilia is not curable, steps should be taken to maintain an active, productive lifestyle by proper treatment and healthy living tips.

Can your child live a normal life with Hemophilia? Yes, he can. Read the following to know how

1. Keep up with regular medical checkups and get vaccinated.
2. Exercise at least 3 times a week or as recommended by physiotherapist.
3. Maintain an ideal body weight.
4. Follow the treatment plans as prescribed by the doctor.
5. Get tested early for blood borne infections.
6. Treat bleeds early and adequately.
7. Eat healthy.
8. Always wear a seatbelt, helmets (in case of driving or riding).
9. Make time for yourself.
10. Get a good night’s sleep.

Last but not the least; you can live your life with hemophilia, the way you want. There is nothing in this world a hemophilic can’t do.