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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. Indeed, you may be misdiagnosed at first, even by a gastroenterologist, as most do not have expertise in PSC. Many PSC Partners Seeking a Cure members report having been told their symptoms were “in their head” and/or that they had other digestive diseases until the diagnosis of PSC was ultimately confirmed. Our members have had to educate themselves and sometimes their doctors about PSC. They and caregivers have had to be persistent in advocating for themselves.

If not already being seen by a subspecialist with experience taking care of individuals with PSC, you should 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). He or she should also explain the disease and the approach to management and surveillance (i.e. monitoring).  Of note, a gastroenterologist treats diseases and conditions of the digestive system, whereas a hepatologist is a gastroenterologist who specializes in liver diseases.

Long-Term

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.) will also 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.

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 such as PSC.  Some newly-diagnosed PSCers ask an online support group for recommendations to such a hospital and/or specialist in their area. Reach the support group section by clicking here.

Your local chapter of the American Liver Foundation may have support groups. Talking to other members of the foundation may assist in locating a specialist for your care. Within the field of hepatology there are sub-specialists that focus on various liver diseases, some of whom focus on PSC and other bile duct disorders. Use this link to reach the organization’s web site: www.liverfoundation.org

Check board certification resources.  Because there are a number of certification boards, not all physicians will be listed in 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 if your specialist is certified in internal medicine. Click here to go to the site.

ABMS (American Board of Medical Specialties) also can be searched to determine if your specialist is certified in a specialty. Check out the site herehttp://www.abms.org/

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

Personal Story

Working with medical professionals
Write down your questions and don’t be afraid to ask them. Don’t go away without an answer. In most countries, you have a right to your records.

If you are not feeling well (and sometimes that will happen), take someone along as an advocate: a caregiver, spouse, parent, adult offspring, and friend.

Follow your medical professional’s advice. There’s a reason it takes 8-12 years to become a doctor. If you really think they are wrong, get a second opinion.

Arne M.