Frequently Asked Questions
We know you’ve got questions. We can’t wait to answer them, and here’s a good place to start.
A platelet aggregation test. When the different chemicals (agonists) are mixed with a GT patient’s platelets, only the antibiotic ristocetin makes them clump together.
Treatment options can vary largely based on each patient. The majority of doctor’s not familiar with GT will suggest platelet transfusions for most major bleeds. We recommend you do this as a LAST resort due to the risk of your body producing antibodies. Platelets should always be your last trick in the bag.
If platelets are needed, HLA matched platelets are the best way to ensure the risk of antibodies is as low as possible.
Another treatment option is using NovoSeven to help with blood coagulation in both patients with antibodies and without. It is important to note that this should be the first method to try and stop major bleeds. Dosage and infusion times will vary based on the patient.
For minor bleeds and bruises make sure to visit our treatments and products page, Facebook support group, or email us at firstname.lastname@example.org. You would be amazed at what parents can come up with to stop a bad nose bleed.
Yes, and no. Currently, Doctor Wilcox has developed a potential cure for GT that works in mice, dogs, and cells from human patients affected with GT. The current goal is to test stem cell gene therapy in humans with a phase I first-in-human clinical trial to see if it is safe and effective. Funding is of the utmost importance in this final stretch towards human trials.
This can vary with every case of GT. It can be very hard to know exactly how pregnancy and birth can affect each patient. Make sure to discuss your options with your doctor and speak to other GT patients with similar symptoms.
Almost completely normal! Keep in mind that your child does not know they have a rare disease. All you can do is do your best to keep them safe while also giving them enough room to just be kids.
Try to keep them away from contact sports like soccer, football, hockey, etc. Some sports that many patients have enjoyed are swimming and tennis.
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