Testimony of Anne Seidel

Senator Collins and members of the Committee, thank you for the opportunity to appear before you today as an example of a true success story; a story resulting from a strong public-private partnership between the JDRF and the Federal government in supporting medical research and the NIH. I am Anne Seidel, the proud mom of six-year-old Charlie and five year old Lacey. I have been an active JDRF volunteer in Texas and nationally for the past five years.

I was diagnosed with juvenile diabetes 35 years ago at age 6. My son Charlie, now six, was diagnosed five years ago. I cannot describe to you the anguish I experienced when he was diagnosed with juvenile diabetes. As a mother, your focus in life is caring for and protecting your children, and yet I was unable to protect him from a disease that had been ravaging my body for nearly 30 years.

While I focused all of my energy on caring for Charlie after he was diagnosed, diabetes was taking an enormous toll on my body. Over the years of living with diabetes, I have won the battle of near blindness and kept going; I have had nerve damage in my feet and partial paralysis of my stomach and kept going. My blood sugars would jump from being at a level of 16 - so low that I was in danger of becoming unconscious - to a level of 600 - which is so high that I could slip into a coma -in the course of two hours, then back down and back up. This roller coaster defined many of my days. Most days, feeling nauseated and exhausted, I kept on going.

But the complication of my diabetes that prevented me from keeping on going was losing my ability to feel when my blood sugars went severely low. Instead of being able to sense this and to quickly ingest sugar for a quick recovery, my blood sugar would keep dropping until I was unconscious, blacked-out, totaled my car, or was so confused that I didn't know who I was, who my kids were, or whose diabetes I was trying to treat. Several times, so confused with a low blood sugar, I came very close to mistakenly giving Charlie extra insulin when he didn't need it. The result of that could have been his death.

About 4 years ago, I began watching - with more than a passing interest - the advancement of pancreatic islet cell transplantation. Upon investigation, the state of my diabetes matched the criteria for participating in the clinical trials. When deciding to participate in the trials, I had to come to terms with the fact that the procedure was not being offered to children because of the immunosuppressive drugs that the patient must take following the transplant. As a mother, your instinct is to help your child first. After lots of introspection, I concluded that it was ok for the parent to put on the plane's oxygen mask first so that they could save their child, and I must do the same with my diabetes.

After speaking with every center in the world that was conducting islet transplants, I was screened at several places and I chose one list on which to be listed. Because of the severe shortage of pancreases in the U.S., and with my rare blood type, I spent over two years on the list waiting and hoping for the call. Each day that passed, I worried that my diabetes would worsen while I waited which might prevent me from participating in the trial. I decided to increase my chances for a transplant and I listed at three additional centers.

I received my transplant on February 5th and my second on April 9, 2003. Most of the current protocols involve two transplants to receive the appropriate number of islet cells. I was called to come to The Methodist Hospital in Houston, and the insulin-producing islet cells were extracted from a donor pancreas and put into an IV bag. While this was being done, I changed into my gown, the radiologist fed a small needle into a vein in my liver, and the cells dripped into me. I was in the surgery suite for a total of 20 minutes, and I was conscious throughout the procedure. Back in the recovery room, I looked down at my side and said to the surgeon, "You just saved my life and all I have to show for it is this regular size band-aid?!" 30 hours after the transplant, I was sent home.

Since my transplant, I no longer need to take insulin. To give you a sense of how dramatically this has changed my life, in the 35 years that I have had juvenile diabetes, I have taken 255,500 units of insulin and have pricked my fingers 56,210 times. For the first 12 years that I had juvenile diabetes, I tested my urine 21,900 times! People have asked me to describe how I feel since my transplant, and the best analogy I can think of is that I feel like I had not bathed in 35 years and that someone finally washed me clean.

Another amazing result of the transplant is that many of the complications that plagued my days before the transplant are now gone. The nausea, exhaustion, confusion, unconsciousness, foot pain, and a large helping of fear are all gone. Having energy, clear thoughts, not feeling fearful of endangering my children or anyone else has been nothing less than utopia. Diabetes doesn't define me anymore - I truly have received the gift of a lifetime.

As one of the approximately 250 people whose life has been changed through an islet cell transplant, I thank you from the bottom of my heart. Your commitment to the NIH, coupled with JDRF's commitment, has truly saved my life. But there is no time to sit back and congratulate ourselves because there are many more who cannot take advantage of this procedure. And I will not rest until my son Charlie, the hundreds of innocent children who you see before you today, and the over one million people who suffer from this disease can also be cured. They deserve no less. Call me demanding, but I do not relish being one of the few who have been saved.

It may sound strange, but diabetes has given me many gifts and opportunities - one of which is the privilege of appearing before you today to publicly thank you and JDRF for making my transplant possible. A cure is within our grasp, and together we will find it.