Living with Hemophilia

Just like any other disease, hemophilia too comes with certain cares and precautions that need to be taken. Instead of allowing hemophilia to take the zest away from your life, you should try to conquer it with your family.

Living with hemophilia has been made considerably easier with new therapies and technologies. With new medication and therapies the life expectancy of hemophilia patients has leaped from 13 years of age to 50+ years of age. Such advancements have been noticed around the world. This is indicative of the medical solutions that are available for the treatment of hemophilia. Although there is no permanent cure of hemophilia yet, therapies sure provide relief and negate the immediate risks associated with internal and spontaneous bleeding.

If hemophilia runs in your family, then understanding each other’s needs becomes slightly easier and so does communicating about apprehensions. While living with hemophilia, it is extremely important to strike a balance between maintaining your personal fitness and also taking care of your children’s. Parents should set an example for the children to maintain good fitness levels and a healthy immune system. Such measures could include:

  • Healthy eating habits
  • A well planned fitness regime which does not stress the joints
  • Make swimming your family recreation activity. It is one of the few activities that strengthens each muscle of your body without laying stress on the joints.

In case one of your children is living with hemophilia, then:

  • Parents should encourage children to discuss the condition with them.
  • Also they should be taught how to give themselves first aid in case of an emergency
  • Parents should freely discuss the physical health of the child with the teachers and any other guardian in-charge.
  • A good doctor should always be consulted to monitor the child’s health.
  • Parents should also be vigilant of the child’s activity and ensure that he adheres to safety measures, like wearing a helmet while riding etc.

Living with hemophilia requires caution but it certainly does not mean that you cannot lead a relatively normal life. It does not mean that you cannot enjoy long vacations, but it does mean that you need to be in the proximity of your clotting factor solution. You should also abstain from activities that could directly or indirectly be a cause of a bleed, like carrying heavy weight. This can lay stress on the joints causing a bleed.

Today, therapies also allow you to store the factor solutions in your home refrigerators. These have to be stored at temperatures below 4 Degree Celsius. Storing factor solutions in your home, would allow you to self infuse the solution in case of any emergency or as a preventive measure as prescribed by your consultant. This greatly reduces hazards that were previously caused doe to a delay in the injection of the clotting factor in case a bleed occurs.

Availability of recombinant factors has wiped out the problems that were previously posed due to infusion of infected blood. Since recombinant factors are prepared in the laboratories, they do not involve any infection complications.

Although many treatment alternatives are available for people living with hemophilia, there is still no permanent cure that has been found. Gene therapy however, has showed some success in its trial phase. This is seen as the only silver lining for hemophiliacs in the near future, where the defected gene can be permanently replaced with a corrected gene. Gene therapy will give a carefree childhood to the young children suffering from the disease and a normal lifestyle to all those who have grown up with the disease.

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