Self-advocacy for women
If you are a woman or girl with a bleeding disorder like haemophilia or von Willebrand disease (VWD), getting good care for your bleeding disorder in an emergency or if you are having medical or dental procedures can involve some preparation and being able to speak up for yourself. Educating yourself about your bleeding disorder, getting a diagnosis and a treatment plan from a specialist Haemophilia Treatment Centre (HTC) and preparing for emergencies and procedures with your HTC – this will make a huge difference to your treatment experience.
Also, people are free to bring others into clinics with them for advice, support or second view point. While being your own self advocate is the most important, bringing someone with knowledge of the condition, someone from the haemophilia society may be useful as a third party to help in more difficult situations
What should i bring?
Not all doctors or nurses will have a lot of experience with bleeding disorders, so consider bringing a diary of symptoms along with you. It can be helpful to keep a health diary for a month or two by preparing answers to the questions below before visiting your clinician. If you are treated in a haemophilia centre, request that your bleeding symptoms be noted in your chart. This will help you and your doctor or nurse in discussing what steps to take next and build a better picture of you bleeding symptoms over time. Some questions you should consider before your appointment and have answers with you on the day are:
• When did your symptoms begin?
• What lead to these symptoms?
• Make note of your energy level. When was it high? When was it low?
• Have you had nose bleeds that lasted longer than 10 minutes? How often?
• How old were you when you had your first period?
• How many days do you have between the start of one period and the start of the next one?
• How many days does your period last?
• How many days do you consider your period to be heavy?
• How often do you have to change your pads or tampons?
• Do you have to double up on pads and/or tampons, especially at night?
• Do you experience pain during your periods? What makes them feel better? What makes them worse?
• Do your symptoms interfere with your daily life?
• Do any of the girls or women in your family have heavy periods?
• Do any of the girls or women in your family have any of the bleeding disorder symptoms listed in the section above?
• Has anyone in your family had similar bleeding symptoms?
• Has anyone in your family been diagnosed with a bleeding disorder, such as von Willebrand disease or haemophilia? Are you taking any prescription or non-prescription medications?
It’s a good idea to track your menstrual flow even before you make that first visit. Tracking can be done easily using the charts or apps.
What should i ask?
Being prepared for your clinic visit also means coming with a list of questions you may have for your provider about your symptoms and care. Make sure to come up with your own questions but here is a list of helpful ones to get you started:
• Will any diagnostic test be run? If yes, which ones? When would I find out the results?
• How can I manage my pain/symptoms while I wait for a diagnosis?
• Will I need to be referred to a specialist for testing and diagnosis?
• What if my labs don’t show anything?