[Congressional Record Volume 150, Number 110 (Wednesday, September 15, 2004)]
[Extensions of Remarks]
[Page E1624]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                   HONORING THE WORK OF DEBRA BARRON

                                 ______
                                 

                         HON. KENDRICK B. MEEK

                               of florida

                    in the house of representatives

                      Tuesday, September 14, 2004

  Mr. MEEK of Florida. Mr. Speaker, I rise to honor the work of one of 
my constituents, Debra Barron, who suffers from a debilitating disease 
called scleroderma. Debra and her family have been tireless advocates 
in drawing public attention to this painful condition. Her work 
demonstrates her strength and resolve, and I ask that her remarks from 
the March 20, 2004 Scleroderma Foundation Wine Auction & Dinner in 
Broward County be entered into the Congressional Record.

       Imagine for a moment you're a 26-year-old newlywed . . . 
     young, healthy, athletic, and pursuing a serious career. That 
     was me in September 1981, when, one afternoon as I'm washing 
     my hands the color in them suddenly changed from pink to 
     stark white. There was no warning, no pain or discomfort. Two 
     weeks later, after a battery of tests requiring copious 
     amounts of my blood, a doctor at the George Washington 
     Hospital Center in D.C. informs me I have a ``condition'' 
     known as Raynauds, which is basically a loss of circulation 
     to the extremities. Raynauds is easily manageable with 
     medication and isn't a problem except when the circulation 
     returns; some will experience a minor sensation such as 
     tingling while others endure severe pain as the blood vessels 
     return to normal and the color returns. So there I am, I'm 
     26, having never been seriously sick a day in my life, and I 
     think to myself . . . ``This is nothing. Go home and don't 
     worry.''
       My husband, Gary, and I moved to San Francisco in 1982. My 
     doctor in DC suggested I seek out a physician to monitor my 
     condition in the event. I needed follow-up care. Since I 
     needed a physician anyway I'm not too concerned. From 1982 to 
     1983 the Raynauds become aggressive. The first to go was my 
     left index fingertip which developed a gangrene-type sore, 
     and had to be removed by a doctor, also losing my fingernail 
     and some bone matter. No problem . . . I still had nine good 
     fingers but, as time elapsed, more fingers became infected 
     and each episode brought new horrors, as well as physical 
     pain, as I watched my fingers literally die. Needless to say 
     there went my regular manicure appointments.
       By the spring of 1983, my condition had become more 
     aggressive. Chewing and swallowing food was now something I 
     actually had to think about because food would get stuck or 
     caught in my esophagus. My doctors were supportive and 
     encouraging, but they were running out of options and I 
     wasn't responding to experimentation with medication. 
     Basically, I was still taking medication for a ``condition'' 
     that was supposed to be manageable.
       The pain was also getting worse. Many scleroderma patients 
     experience severe pain and it becomes a way of life, day in, 
     day out, sometimes for months on end.
       The sores don't heal quickly because the blood vessels 
     clamp down, which suppresses the flow of oxygen to the blood 
     and thereby causes poor circulation. Chronic pain gets old 
     very quickly and it affects everything in your life: I no 
     longer felt young, I certainly didn't feel healthy, I was 
     suffering from fatigue, my career was suffering, and the 
     biggest insult of all was the total loss of my sexuality and 
     how I felt about myself as a woman. I was broken in all the 
     ways that matter to any human being. It didn't help that my 
     family was on the other side of the country, my husband was 
     traveling, and the only thing my doctors could do was offer 
     encouragement. It was at that point I made a conscious 
     decision to do something and as I drove over the Golden Gate 
     Bridge one afternoon, crying from pain, I intended to end my 
     life.
       San Francisco police don't like speeders on the Golden Gate 
     Bridge and I got pulled over. I knew I was about to receive a 
     whopper of a ticket when the officer realized how hard I had 
     been crying. I explained about the pain and told him I was in 
     a hurry to get home to take my pain medication. He offered to 
     escort me home, which he did, took me upstairs to my 
     apartment, waited while I took my medication and stayed with 
     me. He never spoke of God or having faith, nor did he try to 
     offer encouragement. He just sat there with me and let me do 
     the thinking.
       Realizing the consequences of what I tried to do to myself 
     hit me hard. The state of my health was no longer something I 
     could deny and from that point on I chose to become more 
     aggressive regarding my condition. I was basically being 
     monitored, not treated, for a disease no one understood and 
     it still took another 12 years before a doctor finally 
     recognized my symptoms as Scleroderma.
       I still get sores and have to deal with pain but life is 
     good again. I'm in remission now thanks to my scleroderma 
     doctor, Frederick Wigley, at Johns Hopkins plus the myriad 
     physicians that oversee my healthcare.
       I'm very fortunate to have a loving and supportive family, 
     both my immediate family and Gary's family. But, most 
     importantly, the two people I live with have been 
     tremendously supportive.

                          ____________________