New Doctor Information
So you or your child have gotten your GT diagnosis. What's next?
At this point, it is time to find a Hematologist or a hemophilia treatment center (HTC). The doctor you have been working with may have a recommendation for you, or you can reach out to the GT community for suggestions if there is someone near your area already established at an HTC. It is essential to work with a hematologist that feels comfortable handling rare bleeding disorders. There needs to be a mutual level of trust and respect between you and your hematologist. If you start with someone you are not comfortable with, it is okay to seek a second opinion. Your hematologist should work with you to develop a customized treatment plan based on how GT affects you. This should include medications and dosages based on bleed severity and type. Your hematologist should help empower you to become an advocate for yourself and help you feel in control of your bleeding disorder.
Emergency Room Doctor
Emergency room visits can be all too common for those with GT. Dealing with an emergency room doctor can be a tricky situation to navigate. It is always beneficial to come prepared with your treatment plan from your hematologist’s office. This is something you can carry with you on your phone to show the emergency room staff or something you can carry in a folder to provide the ER staff with a copy. When in the ER, it is essential to remember that you can always advocate for yourself or your child. If there is a plan set in place by an unfamiliar doctor that you are not comfortable with, please don't be afraid to question it or request that they consult with your HTC before proceeding. That being said, there are a few things to consider when ER doctors are developing a treatment plan. In most cases, the ER doctor will not have heard of or treated anyone with GT. This is why it is essential to come prepared with your HTC treatment plan so that they can get your care set up quickly.
Dental care for GT patients can be scary. There is always a chance of a bleed with any dental cleaning or procedure. When looking for a new dentist still feel free to discuss any recommendations with your hematologist. Many times they will have a list of dentists they recommend. For any dental procedures such as wisdom tooth extraction, a conversation with your hematologist and dentist should be had for the best treatment plan to be put into place. This way, the risk is minimized, and if there is a bleed, it can be handled appropriately.
For the girls and women out there with GT, it is crucial to find a gynecologist who has experience with abnormal bleeding and high-risk pregnancy. While menstruation is not always a problem for GT women, it can be a severe one. It will be very beneficial to have an experienced OBGYN to help determine the best course of action for both mensuration and any GT women who would like to have children. There are so many options nowadays for period prevention/reduction. There is no one size fits all, so it will be beneficial to have a doctor who has experience tweaking dosing regimens or options for when this time comes. Your hematologist is an excellent resource for information when the time comes to find an OBGYN.