Pipeline to Care
Once your Primary Health Care Provider learns about your bleeding disorders patterns, they will refer you to Manitoba Bleeding Disorders Program. You might be the first person in your family to be diagnosed. You may have other family members who have already been diagnosed. Carriers of Hemophilia may have a child in the pediatric program, but require a referral to the Manitoba Bleeding Disorders Program for their own care and treatment
Testing for Adult Women with family history of bleeding disorder (Carriers)
The Women and Bleeding Disorders seminar held on October 1st 2019th raised questions about how women can access the adult side of the Manitoba Bleeding Disorders Program. Here is some information on the process to access carrier testing through the Manitoba Bleeding Disorders Program. Adult women with family members with hemophilia may want to know if they are carriers of hemophilia.
To begin the process, you need to ask your Primary Care Provider for a referral to the Manitoba Bleeding Disorders Program. A formal referral to the Program provides you a medical professional to communicate with, and also creates a formal chart in Cancer Care Manitoba for your records. It is important to tell your Primary Care Provider to address the referral to the Bleeding Disorders Program and send it to the Referrals Office at the Cancer Care Manitoba. Please tell the medical professional the referral needs to say “family history of hemophilia and potential carrier”. If you have had any prior bleeding issues, this is the time to highlight those. Once the Manitoba Bleeding Disorders Program has received the referral, they will contact you to arrange a clinic appointment.
Testing for undiagnosed Women and Girls that have unknown family history of bleeding disorders
It is important to tell your Primary Care Provider to address the referral to the Bleeding Disorders Program and send it to the Referrals Office at Cancer Care Manitoba. If you have had any prior bleeding issues, this is the time to highlight those. Once the Manitoba Bleeding Disorders Program has received the referral, they will contact you to arrange a clinic appointment.
“For girls who are potential carriers, the urgency of testing depends on their clinical problems. The Canadian Pediatric Society recommends against the genetic testing of minors without either their understanding and agreement (assent), or a medical reason for the testing. If there are no bleeding symptoms, we would not need to test these girls unless they asked to find out. When testing is done, we can either measure the factor level, which is probably the most relevant clinical information, or send the blood for analysis of the factor 8 or 9 gene. Often we will do both to be certain that we get the answer, since not all carriers will have abnormal factor levels. If you have questions about your girls, please speak to the Bleeding Disorders team, and we’d be happy to discuss the specific details with you.” Pediatric carrier testing by Dr. Stoffman.