Living with hemophilia can be challenging not only for patients, but also for their families and all who interact with them.

With vigilance, the right information, awareness, and care, patients can maintain a reasonably normal lifestyle.

Facts about hemophilia

• It is a rare, inherited bleeding disorder where the blood does not contain the clotting factor.
• Since clotting-proteins are absent in the blood, slight injury or impact can be hazardous, as it could cause uncontrollable bleeding.
• Spontaneous bleeding may occur.
• While smaller injuries may not be life-threatening, in severe cases internal bleeding is a huge risk.
• As yet, there is no known cure for this condition, but it can be managed.
• It affects mainly males, but females are the carriers of the gene and they may or may not have symptoms of the condition.

Tips For hemophilia patients
Practical and effective lifestyle tips for hemophilia patients include:

• Consistent and regular monitoring
  Blood transfusion or infusion of blood-clotting factor and pain management medications have to be monitored closely by professionals and in home-care. Small children may have implanted devices to avoid the inconvenience of frequent injections. It is essential to avoid medications like aspirin, ibuprofen, warfarin, heparin etc., and consult one’s doctor for pain-relief medication.
• Weight management
  Since hemophilia patients cannot participate in contact sports or those that carry the risk of falling/injury, it’s not easy for them to manage their weight. Obesity poses a risk as it loads the joints with extra weight and leads to spontaneous bleeding. Weight can be managed by taking up sports like swimming, cycling, brisk walking etc.
• Diet and nutrition
  One should eat healthy nutritious foods and avoid processed, junk foods and those that are likely to irritate the digestive system. Diet control is essential for weight management.
• Dental hygiene
  Regular dental check-ups prevent plaque build-up, gum disease, and bleeding. It is vital to ensure that one is treated by a dental care provider who knows about their condition and is capable of dealing with it.
• Maintain records
  One should keep a journal of all bleeding episodes so that they have a record of the reasons, treatment, physicians/health-care providers, emergency treatments, and locations, etc. If they have other health issues and conditions, records have to be kept where they can be accessed immediately. It is of utmost importance to inform key persons in one’s life about these things.
• Share information
  While we all prefer our personal details to remain confidential, it’s important to inform relevant persons like family-members, academic staff, co-workers, leisure, and gym staff, etc., so that they know what to do in an emergency. One must keep a check-list of do’s and don’t s at home and work.
• Safety first
  Children with hemophilia must wear protective gear while they’re out cycling or skating etc. Helmets and knee/elbow pads are mandatory. Ensure that they learn to belt up as a habit when traveling in a vehicle. While it’s difficult to restrict kids too much, parents must train them to avoid rough play and ensure that the home is a safe place and designed to prevent injuries.