Newly Diagnosed

Newly Diagnosed

Where to Begin

A diagnosis of Fanconi anemia (FA) is always a shock. After learning all you can about the disease and the various treatment options, families and patients need to start planning ahead for long-term care and support. One of your most important decisions is selecting where to get your care.

The Fanconi Anemia Center is one of the few places in the U.S. where families dealing with FA can receive comprehensive long-term care plus haveaccess to the newest specialized treatments such as gene therapy.

Our pediatric bone marrow experts and transplant specialists are ready to assist patients of any age, newly diagnosed or previously treated, with any special complications or conditions.

What to Expect

Every FA patient coming to SCCA's Fanconi Anemia Center sees a pediatric hematologist who specializes in FA.

After a comprehensive evaluation and review of past medical history, all the necessary tests and exams are coordinated and expedited. Results are discussed by our full team of pediatric specialists and an individualized long-term care plan is mapped out.

Any required treatment or planning for possible bone marrow or blood cell  transplantation is initiated immediately. For children with no immediate indication or need for transplantation a monitoring program is set up. In many cases, this monitoring involves blood counts three to four times per year (done with the patient’s local physician) and one yearly trip to SCCA for an in-depth evaluation.

Our bone marrow failure team meets biweekly to ensure that FA patients remain in optimal condition should transplant be required. Post-transplant FA patients are tracked carefully for potential long-term effects.

Any other treatments required to relieve symptoms or correct problems (birth defects, growth problems, solid tumors, abnormal hearts or gastrointestinal tracts) are also initiated by medical staff at Seattle Children’s or University of Washington Medical Center.

Our doctors always reach out to families and their physicians to make sure patients receive appropriate care, avoid risks, and get access to clinical trials. For all patients and families, we offer ongoing FA education, personalized care, group or individual counseling, and connection with support services.