PBCers MEETING THE CHALLENGE

 

 

Let’s Walk for Liver Disease                                             by Anne Vertrees

 

The Pacific Northwest Chapter of the American Liver Foundation sponsored the 2nd annual Liver Awareness Walk on October 20, 2002 at Green Lake in Seattle.  The gala event featured a 2.6 mile walk, with several teams participating. Many types of liver diseases were represented.  The local PBCers group, aptly named “The Daisy Ducts”, had approximately 30 walkers and raised awareness and funds for “The PBC Fund for the Cure.”  Our team included an eleven month old daughter of a PBCer in a duck costume, dogs, and friends and family of PBCers.  The walkers collectively earned $12,500 for liver disease education and research.

 

We were honored to be joined in the walk by Joan Gallagher and Alan Brownstein from the American Liver Foundation national office.  A feature of the walk included educational signs along the walk route educating others about liver disease.  We were joined by team members of the Seattle Thunderbirds hockey team and the post walk celebration was fun and entertaining. 

 

 

Our group sincerely thanks the local chapter’s Barbara Hernandez, Lori Jump and Janice Baxter for their work to make the walk a great success.  We hope to participate next year with even more representation from the PBCer community.  *

 
 
                                                                                                                                                                               

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


FAMILIAL ASSOCIATION

IN AUTOIMMUNE LIVER DISEASE

 

Jorge A. Findor, Juan A. SordA, Jorge R. Daruich, Estela F. Manero 

División de Gastroenterología, Hospital de Clínicas José de San Martín, Facultad de Medicina, Universidad de Buenos Aires

Abstract:  The occurrence of autoimmune liver disease in members of the same family is hardly a frequent observation in clinical practice. In a group of 204 cases of primary biliary cirrhosis (PBC) (196 women) and 219 of type 1 autoimmune hepatitis (AIH) (183 women), seen from 1985 to 2000, family occurrence of autoimmune liver disease was investigated. Diagnosis of both entities was based on clinical criteria, immunological studies and liver biopsy. Six  families were identified with 2 members each presenting with autoimmune liver disease. In 4 of them the index case had an AIH. This association was observed between mother and daughter in 3 instances. In the remaining AIH index case the association found was with a PBC in her sister. In the other two families the index cases were PBC. In one of them, PBC and AIH association were observed in sisters. Lastly, in another case, an antimitochondrial (AMA) negative variant of PBC was detected in mother and her daughter. The low frequency of family association observed in this cohort could be due to the fact that only symptomatic cases were included. Concurrent autoimmune manifestations were confirmed in 5 members of 6 families (42%). Our results, given the concurrence of both liver diseases in the same family, suggest a link among diverse entities of the autoimmune lineage. The frequency of AIH family association seems to be more prominent in this series than that of PBC. It is also shown that family association in the case of an AMA-negative variant of PBC is feasible, thus confirming that no substantial differences exist between the latter and AMA-positive PBC.

Reprinted with permission
 

PBCers Org. Doctors Advisory Panel Q & A:


”Is PBC considered a terminal illness? “

My answer would be no.

A terminal illness is generally considered a disease which leads to a rapid and sometimes painful death. There is no surviving a terminal illness. Terminal illness generally refers to cancers. PBC is a very slowly progressive disease which may not lead to death. In that regard and only that regard, PBC is no different from heart disease, rheumatoid arthritis, diabetes, and hypertension.  Most people with PBC live to a ripe old age and may not be adversely affected by the disorder. Therefore, PBC does not fit any of the criteria of a terminal illness. I would not include this term in any description of PBC. PBC patients have hope for improved therapies and long term survival. Patients with a terminal illness have lost all hope of cure or survival.

By the way, cirrhosis itself is also not a terminal disease. Many people with cirrhosis will live a long term and not be affected by there disease. We as people need hope for without hope we are already dead.

Perhaps some of the PBCers who have been told they have a terminal disease should find a new doctor!

 

David Bernstein, M.D.
Chief, Division of Gastroenterology
North Shore University Hospital, Manhasset, NY