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Find a Specialist

Find a Specialist

Because PSC is a rare disease, most family and internal medicine physicians do not see or treat many patients with the condition. In fact, many people with primary sclerosing cholangitis (PSC) are misdiagnosed at first, even by a gastroenterologist, as most do not have expertise in PSC. Patients and caregivers must educate themselves and sometimes their doctors about PSC and become advocates to ensure they are put on the correct treatment path.

Steps To Follow for Long-Term Care

  • Find a Hepatologist: If you are not already being seen by a subspecialist with experience taking care of individuals with PSC, ask for a referral to a hepatologist (a liver doctor). Most hepatologists will know the particular diagnostic tests to determine if you have PSC, the degree to which it is affecting your liver, as well as any other disorders that may be associated with PSC, such as inflammatory bowel disease (IBD). They also can explain the disease and the approach to management and monitoring.
    • Of note, a gastroenterologist treats diseases and conditions of the digestive system, whereas a hepatologist is a gastroenterologist who specializes in liver diseases.

 

  • Develop a Relationship with Entire Care Team: You and your caregiver will be seeing your specialist for long-term care, so it is important to develop a solid working relationship. You should choose a doctor in whom you have confidence and who takes the time to answer your questions thoroughly. You need to feel OK about asking for what you need. The team supporting the doctor (desk staff, Physician’s Assistant, etc.) also will be working closely with you. They should respect your requests, take them seriously, and respond back to you in a timely and professional manner. If you feel your doctor is not right for you, consider finding another specialist.

 

  • Other Resources:
    • Often an academic or teaching hospital has teams of hepatologists (and other medical professionals such as liver surgeons, gastroenterologists, radiologists, and pathologists) who collectively help take care of patients with rare diseases like PSC. Some newly-diagnosed PSCers ask an online support group for recommendations.
    • Check board certification. Because there are a number of certification boards, not all physicians will be on every list, and many excellent hepatologists and gastroenterologists may not be listed at all. At the ABIM (American Board of Internal Medicine) site, you can verify that your specialist is certified in internal medicine.
    • ABMS (American Board of Medical Specialties) also can be searched here to determine if your specialist is certified.

 

PSC RESEARCH CENTERS

Major PSC research centers in North America are listed below. In contacting one of these PSC research centers, or any medical facility, it is important to recognize that not all clinicians will have substantive knowledge of PSC. Accordingly, and to the extent possible, individuals contacting these centers should specifically look for and request providers/hepatologists who have a dedicated interest and expertise in PSC.

  • Adult
    • Beth Israel Deaconess Medical Center
    • Mayo Clinic, Rochester
    • Mount Sinai Medical Center, New York
    • Tufts, Boston
    • University of California, San Francisco
    • University of Colorado Health Sciences Center, Denver
    • University of Pittsburgh
    • University of Toronto
    • Virginia Commonwealth, Richmond
  • Pediatric
    • Children’s Hospital of Boston
    • Children’s Memorial Hospital, Chicago
    • Children’s Hospital of Denver
    • Children’s Hospital of Pittsburgh
    • Cincinnati Children’s Hospital
    • Hospital for Sick Children, Toronto
    • Le Bonheur Children’s Medical Center
    • Lucile Packard Children’s Hospital at Stanford
    • Mayo Clinic
    • Mount Sinai Medical Center, New York
    • University of California, San Francisco