July 17th 2001 my husband Steven Adelman died from complications of liver disease due to Hepatitis C. Steven was 45, outgoing, a smart businessman, a great handball player and a friend to so many people. He lived the last 8 years of his life knowing that he had hepatitis, and hiding it from everyone he knew and loved. Steven felt the stigma of the disease would prevent him from doing the things he loved to do with the time he had left. Not even his father or twin sister knew until the end.
We lived in silence and fear. We knew little about the course of the disease and spent much of the time in denial. He was lucky in that he had few severe symptoms until the last few months of his life. He experienced vassal bleeds on one occasion that almost took his life. His true decline only lasted two weeks. Two weeks of intensive care, blood transfusions around the clock, dialysis, surgical procedures, pain and tears. It’s hard to describe the horror Steven endured or the things that we went through watching him bleed to death, because his liver was no longer functioning.
After Steven’s death, I was consumed with thoughts of what we could have done different. If we had only known more about the disease and taken it more serious, would he still be alive? If his friends and family would have been in on the secret would they have been more supportive of his living a healthier lifestyle? If he had given treatment a chance could he have been cured? A year passed and I was invited to participate in the formation of a new charity which consisted of a group of liver disease patients, their friends, family and other supporters.
This became known as The Friends of the Saint Louis University Liver Center. This group of Friends raised over $500,000.00 in our first two day fundraising event known as the Denim and Diamonds Weekend. After the event I was asked to be the first President of the Friends Board of Directors. Together the board members and volunteers have made a commitment to raise money to help support the research at the Saint Louis University Liver Center, to eliminate Hepatitis C and many other liver diseases. These monies have been used to generate additional funding and have led to millions of dollars in additional research grants. We can not begin to imagine the awareness that has been raised along the way. My involvement with the Friend’s organization had given me the opportunity to speak out and no longer have to be silent about this horrible disease, that kills so many. I do not want to see others suffer with this disease alone.
My work is a tribute to Steven and his love. I am thankful that his life brought so many of you into mine. I am grateful for your support since his passing. Please help in honoring his life and continuing this important mission with whatever you feel you can contribute to our cause by using the secure online payment method below.
Robin Ude, Ph.D.