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Porphyria Educational Services

 

PORPHRYIA EDUCATIONAL SERVICES BULLETIN
Vol. 2 No. 14                            April 2, 2000
FOCUS:  Hepatitus C Infection  and Porphyria

            Several organizations are currently looking at the role of 
Hepatitus C and research grants have been offered by various leading 
groups to conduct both basic and clinical research regarding Hepatitus C.
Invitations and notices of such research were posted in June 
1998 and some studies are now well underway. 

 

         Such research  involves the areas of natural history, 
pathogenesis, therapy and prevention of Hepatitus C.

 

         Hepatitus C research would be most beneficial to many porphyria
patients, especially those with PCT.  A high number of PCT patients also
have the Hepatitus C condition in addition to their PCT.  Other hepatic porphyrias
are also known to sometimes deal with Hepatitus C.

 

            Some of the leading organizations involve in these studies 
include the National Institute of Diabetes and Digestive and Kidney 
Diseases,National Cancer Institute, National Institute of Allergy 
and Infectious Diseases, National Institute on Drug Abuse, National 
Institute on Alcohol ABuse,Office of AIDS Research, the American 
Digestive Health Foundation and the Office of Research on Minority Health.

 

        Chronic liver disease is experience by many porphyria patients as
the disease progresses and continues to manifests new or advanced 
symptomology. The hepatitis C virus is a major cause of acute and
chronic liver disease. In porphyria cirrhosis or liver failure 
may also occur.

 

        With the Hepatitus C experience by so many PCT type porphyria 
patients the infection goes from the acute stage to the chronic.
Acute hepatitis C leads to chronic infection in approximately 
75% of cases according to various studies that have been undertaken.

 

          Chronic hepatitis C is often asymptomatic and can be mild; 
but in a proportion of patients, the chronic infection leads to 
progressive liver disease. Many PCT patients with the Hepatitus C
in the past have  ultimately incurred cirrhosis and end
stage-liver disease, including hepatic carcinoma [liver cancer].

 

          The determinants of outcome and progression of liver 
disease in hepatitis C are unknown but may be related either
to viral, behavioral, environmental or genetic factors of the 
infected patient.  In addition, alcohol use, other medical 
conditions such as a form of porphyria, and co-infection with 
other viruses may also affect the disease outcome of hepatitis 
C infection. 
        
        Currently the treatment of Hepatitus C is not very good.
Only a small percentage of porphyria patients respond to
currently available therapies with long term remission of 
liver disease. 

 

            Researchers and physicians alike note that the most 
effective way to prevent the liver disease of hepatitis C is through 
the development of a preventative vaccine.  Thus, the focus of 
research for porphyria related Hepatitus C is the development of
a vaccine for hepatitis C. A study through NIH is providing partial
funding for such research.

 

        The future for porphyria patients with Hepatitus C lies in
the development of a vaccine for the Hepatitus.