Living with hemophilia

If someone is suffering from hemophilia, he/she can take steps to prevent bleeding problems. A person who has hemophilia today is likely to live a normal lifespan.

 

Ongoing Care

Some steps can be taken to avoid complications. For example:

·               Following the treatment plan exactly as a doctor prescribes.

·               Having regular checkups and vaccinations as recommended.

·            Telling all of the health care providers—such as the doctor, dentist, and pharmacist—that the patient has hemophilia. The patient may want to tell people like the employee health nurse, gym trainer, and sports coach about the condition.

·            Have regular dental care. Dentists at the HTCs are experts in providing dental care for people who have hemophilia. If you see another dentist, tell him or her that you have hemophilia. The dentist can provide medicine that will reduce bleeding during dental work.

·               Knowing the signs and symptoms of bleeding in joints and other parts of the body.

·               Knowing when to the doctor or go to the emergency room. For example:

Ø       Heavy bleeding that can't be stopped or a wound that continues to ooze blood.

Ø       Any signs or symptoms of bleeding in the brain. Such bleeding is life threatening and requires emergency care.

Ø       Limited motion, pain, or swelling of any joint.

It's a good idea to keep a record of all previous treatments. The patient should be sure to take this information with, to medical appointments and to the hospital or emergency room.

If a child is diagnosed with hemophilia

1.      A person should learn all he/she can about the disorder and get the support needed about the child.

2.    Should discuss with doctors and other health care providers about treatment, prevention of bleeding, and what to do during an emergency.

3.    The care teams at HTCs can provide the child with treatment and help educate and support you. The social worker on the team can help with emotional issues, financial and transportation problems, and other concerns.

4.   Seek the many resources available through the Web, books, and other materials, including those provided by national and local hemophilia organizations.

5.    Look into support groups that offer a variety of activities for children who have hemophilia and for family members. Some groups offer summer camps for children who have hemophilia. Ask your doctor, nurse coordinator, or social worker about these groups and camps.

6.    Challenges will occur as your child grows and becomes more active. In addition to treatment and regular health and dental care, your child needs information about hemophilia that he or she can understand.

7.    Children who have hemophilia also need ongoing support, and they need to be reassured that the condition isn't their fault.

8.   Young children who have hemophilia need extra protection from things in the home and elsewhere that could cause injuries and bleeding:

9. Protect toddlers with kneepads, elbow pads, and protective helmets. All children should wear safety helmets when riding tricycles or bicycles.
10. Be sure to use the safety belts and straps in highchairs, car seats, and strollers to protect your child from falls.
11. Remove furniture with sharp corners or pad them while your child is a toddler.
12. Keep out of reach or locked away small and sharp objects and other items that could cause bleeding or harm.
13. Check play equipment and outdoor play areas for possible hazards.
14. You also should learn how to examine your child for and recognize signs of bleeding. Learn to prepare for bleeding episodes when they occur. Keep a cold pack in the freezer ready to use as directed or to take along with you to treat bumps and bruises.
15. Popsicles work fine when there is minor bleeding in the mouth. You also might want to keep a bag ready to go with items you'll need if you must take your child to the emergency room or elsewhere.
16. Be sure that anyone who is responsible for your child knows that he or she has hemophilia. Talk with your child's babysitters, daycare providers, teachers, other school staff, and coaches or leaders of after school activities about when to contact you or to call 9–1–1 for emergency care.
17. Your child should wear a medical ID bracelet or necklace. If your child is injured, the ID will alert anyone caring for your child about his or her hemophilia.