“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?
- A child born with hemophilia will have it all its life.
- About 15% patients have Factor – IX deficiency (Christmas disease).
- Rest has Factor VIII – deficiency (Classical hemophilia).
- Worldwide incidence of hemophilia is estimated to be more than 400,000 people.
- Around 1300 children born in India every year are hemophilic.
- There are 50,000 patients with severe hemophilia A at present.
- 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?
- Indian schools refuse admission to hemophiliac children due to medical emergencies and complications.
- Condition of patient affects the whole family because of fear, anxiety, confusion and guilt.
- 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?
- Hemophiliac patient and their family should fight together against hemophilia.
- Hemophilia should not define his or her identity.
- Parents should accept it in a short period because being in denial for a long time can affect the child’s well being.
- Parents should not withdraw themselves from their own child, relatives, friends and society.
- 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
- Keep up with regular medical checkups and get vaccinated.
- Exercise at least 3 times a week or as recommended by physiotherapist.
- Maintain an ideal body weight.
- Follow the treatment plans as prescribed by the doctor.
- Get tested early for blood borne infections.
- Treat bleeds early and adequately.
- Eat healthy.
- Always wear a seatbelt, helmets (in case of driving or riding).
- Make time for yourself.
- Get a good night’s sleep.
