Because primary sclerosing cholangitis is a rare disease, most family and internal medicine physicians do not treat many patients with the condition. You may be misdiagnosed at first. Many members report having been told their symptoms were “in their head” and/or they had other digestive diseases until PSC was 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.
You should ask for a referral to a specialist, either a gastroenterologist or a hepatologist. Most patients with PSC go to physicians in one of these two specialties. A specialist 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 digestive diseases that may be associated with the condition. A specialist should tell you the stage your disease has progressed to and should develop a plan for treatment. He or she should explain the disease and the approach.
A gastroenterologist treats diseases and conditions of the human digestive system. A hepatologist is a gastroenterologist who specializes in liver diseases.
You and your caregiver will be seeing your specialist for a number of years, so you will have a long-term working relationship. You should choose a doctor you have confidence in 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 will also be working closely with you. They should respect your requests and take them seriously. They should respond back to you in a timely and professional manner. If you feel your doctor is not right for you, consider finding another specialist.
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. Click here to go to the organization’s web site.
Often a teaching hospital in a medical school has teams of gastroenterology or hepatology specialists who handle patients with rare diseases such as PSC.
Some newly-diagnosed PSCers ask the online support group for recommendations to a specialist in their area. Reach the support group section by clicking here.
Check board certification resources. Certain medical groups offer certification in hepatology and these lists are published on the web. 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 here.
The AASLD (American Association for the Study of Liver Diseases) site can be searched by state for names of liver specialists. Click here for the site.
The STOPSC Foundation Research Centers engage researchers seeking cures for PSC. These member facilities may also be a resource to finding a specialist. Check the organization’s website by clicking here.
Major PSC research centers in North America that participate in the STOPSC project are:
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.