For the most part, yes. Individuals with RUNX1 FPD/AML typically present as having low platelets (thrombocytopenia), and the platelets they have are functionally impaired, causing bleeding problems such as nose bleeds, excessive bleeding during minor surgery, and easy bruising. The severity of one’s platelet count determines the quality of one’s life.
While the bleeding manifestations in FPD/AML do not require daily attention, being followed by a hematologist with expertise in platelet disorders is important for several reasons including the need to receive proper education and to optimize care. It is typically recommended to avoid aspirin and non-steroidal analgesics, to maintain optimal dental and gum care, and to know how to manage nosebleeds and the warning signs of an intracranial bleed. Management of menorrhagia is usually done in combination with a gynecologist. It is highly important that both your surgeon and hematologist are in contact for correct surgical management.
In terms of progression to leukemia, RUNX1 FPD/AML carries a 50 percent lifetime risk of leukemia through the acquisition of additional mutations in other genes. Approximately 38.5 percent of men and women in America will be diagnosed with cancer of any site at some point during their lifetime, based on 2012-2014 data provided by cancer.gov. Having RUNX1 FPD/AML increases one’s odds, but this should not be to the detriment of one’s quality of life. Additionally, some family natural histories have their FPD/AML progress to leukemia at later stages of life while some earlier. Much research remains to be done in this realm, and we hope you consider participating in our Patient Registry (coming 2018).