Adults
Hemophilia is identified in most people at a relatively young age, either because they show symptoms early on or because there is a family history of the condition. So as an adult with hemophilia, you've likely been living with it most or all of your life—there probably aren't many issues surrounding the disorder that you haven't already been affected by or at least heard about. But you'll want to make sure you stay informed about the most recent treatment options, such as prophylactic factor infusions, that may not have been available when you were younger.
In about two-thirds of hemophilia cases, the gene mutation that causes the condition is passed on from parents to the child. In about a third of cases, however, there is no family history—the hemophilia is caused by a "spontaneous," or brand new, mutation in the individual. Without a family history, some people are occasionally not diagnosed until they reach adulthood, perhaps after a prolonged bleed following surgery or some other procedure. Other adults are identified as carriers following a hemophilia diagnosis of a baby or child in the family. For adults affected by hemophilia, issues of family and children are often a foremost concern.
Smart Tips for Staying Safe
Make sure you always have contact numbers or addresses of people, clinics, and health centres that can provide immediate information and necessary medical attention when needed. If you don't already wear one, consider a Medic Alert bracelet to notify others of your condition in case you are unable to.
Preventative Bleed Management
Hemophilia is not a condition that stops you from living life to the fullest. Today more than ever there are treatment options and precautions you can take to safeguard your body and prevent future more serious complications.
In recent years, many people with hemophilia have begun to receive factor treatment as prophylaxis—this is a treatment routine designed to prevent bleeding, rather than just treat it once it begins. Prophylactic factor infusions are given just before an activity, or on a regular schedule (usually every 2 or 3 days) to maintain consistent clotting factor levels in the blood. For most people, this treatment regimen results in fewer bleeds. If started early, prophylactic treatment can not only prevent bleeding episodes, but may also help prevent more serious complications such as joint damage and chronic pain.
Learning You Are a Carrier
Being diagnosed as a carrier in your adult years can illicit many responses, including denial, anger, guilt, and grief. Hearing difficult information is not easy, but it is important to keep in mind that adapting to a carrier diagnosis is a process that takes time. You will be helped along the way by healthcare professionals and your local Hemophilia Treatment Centre. It is also very important to include any siblings or other affected family members in your meetings with the HTC team so everyone can learn and adjust to living with hemophilia.
Planning a Family
If you or your partner have hemophilia or are a carrier, there are important issues to consider when planning a family. Because the condition is an inherited genetic disorder, there is a risk that you could pass the condition on to your children. The gene mutation that causes hemophilia can be passed on through either the father or the mother:
- A father with hemophilia will have boys without hemophilia and girls who will be carriers.
- A carrier mother will have a 50/50 chance with each pregnancy of having a boy with hemophilia and a 50/50 chance with each pregnancy of having a girl who is a carrier.
A genetic counselor can help you understand the risks for your future children. It is very important that the carrier mother's doctor knows during her pregnancy that she is a carrier. The sex of the baby should also identified in advance, at least to the doctor, so that if it is a boy that might have hemophilia, a plan can be developed in case of complications. Because the level of clotting factor rises as the pregnancy advances, there is usually no need to worry about excessive bleeding at the time of delivery. But there is a potential for excess bleeding in the first weeks of the postpartum period.
The concerns about the pregnancy of a carrier usually come when people have little knowledge about hemophilia. Education is essential to help you, your partner, and your families to understand all the issues and be prepared. Talk to your doctor, other staff at a Hemophilia Care Centre, or a genetic counselor about your concerns.