newly diagnosed

Charlie's Angel:
"Super Mom" Anne Seidel Fights for Son's Cure

Anne Seidel, 42, always worked hard to take good care of her type 1 diabetes (juvenile diabetes), but her fight with the disease became much more intense after her son, Charlie, was diagnosed at age 2. "I was no longer just a woman with type 1 diabetes," Anne said. "I also became a mother fighting for my child's life."

So when Anne's type 1 diabetes became more and more difficult to manage and she could no longer feel her low blood sugars, she knew she had to help herself so she could stay alive for her kids. She heard about a successful new treatment called islet transplantation, and decided to put herself on a waiting list to receive new islets.

In February of 2003, she got the call that would save her life. Today, this happy mother calls herself cured and says she can't wait for the day when JDRF meets its goal of achieving islet transplantation without the need for immunosuppression, making it a safe treatment for Charlie and everyone suffering with type 1 diabetes.

Q. How were you diagnosed with type 1 diabetes?
A. I had just turned 6 years old, and I was having all the typical symptoms: I started wetting the bed, I was always thirsty, and was losing some weight. My parents thought I must be having kidney problems, so they took me to the pediatrician. As soon as they described my symptoms, the pediatrician knew what it was and sent us to the Children's Medical Center in Dallas, Texas, where I lived then. They kept me in the hospital for two weeks.

Q. What was type 1 diabetes management like when you were growing up?
A. At that time, it was the barbaric ages of type 1 diabetes. We used to have to check our urine for sugar, which I did four times a day. There was no blood sugar testing back then. We also had to boil our needles to sterilize them, and I could only take one shot of insulin a day. We didn't have regular insulin; it was just a long-acting insulin that was not very predictable. I had lots of high blood sugars, because we didn't have carb counting either, but no one could tell me what to do to lower my blood sugar& there were no type 1 diabetes educators and we didn't have regular insulin.

When I was 17, the first blood sugar meters became available. My pediatric endocrinologist got me one and gave me a demonstration, and I remember it took a very long time to check my blood sugar. I think it was something crazy like 15 minutes! Things have really changed, especially in the last 15 years.

Q. Did you ever worry that you wouldn't be able to have children because of type 1 diabetes?
A. Yes, I was told from the time I was diagnosed that I couldn't have kids, and at first I just accepted it as my misfortune. But later on, when I got married, I decided I didn't like that answer and I thought it was worth looking into some more. My endocrinologist said that getting pregnant was a bad idea for me because I already had retinopathy and my type 1 diabetes was always hard to manage.

I was doing everything right; I even went on the insulin pump when I was 24, in the very early days of the pump, but it didn't help that much. Eventually I changed to a more progressive endocrinologist, and he said of course I could have kids if I could somehow get my blood sugars stabilized first. So, that's what I determined to do. As soon as I got my HBA1c in a good range, I started trying to get pregnant.

I had two wonderful pregnancies. My type 1 diabetes was better controlled than ever, because blood sugars usually go down when you're pregnant.

Q. What did you do when you found out Charlie had type 1 diabetes?
A. It was a big surprise. My doctor had told me that there was only a 2 percent chance that I would have a child with type 1 diabetes. The risk for the general population is 1 percent. But when Charlie was 2, I started noticing the signs. He was urinating a lot and was thirsty and hungry all the time. I couldn't bring myself to check his blood sugar, so I had his father take him to the pediatrician. He asked the nurse to check Charlie's blood and she thought we were just being paranoid, but she did it anyway. I was sitting by the phone at home, waiting for the call. His blood sugar came back 385. I don't remember ever being that upset before in my life. I knew what it was going to be like for him.

Q. When did you get involved with JDRF?
A. The first thing I did the day after Charlie's diagnosis was call the local Dallas Chapter of JDRF. It was strange, because a month before Charlie was diagnosed, I took him and Lacey to a local mall where I just happened to see a bunch of business cards on a table. One of them was for the Executive Director of JDRF's Dallas Chapter. For some reason, I stuck it in my purse. Then I forgot about it until Charlie's diagnosis.

I got involved with the chapter immediately. I joined the Board of Directors and chaired a gala. I wanted to do everything I could to help Charlie. We even participated in the first Children's Congress in 1999. It was a terrific experience. JDRF was there when I needed them most. They showed me the "light at the end of the tunnel."

We just moved to San Francisco, California, and I am more involved with JDRF than ever.

Q. Why did you decide to put your name on the list for an islet transplant?
A. Right around the time that Charlie was diagnosed, my type 1 diabetes took a turn for the worse. I was having more and more lows I couldn't feel, and they were causing problems for everyone. Since I couldn't feel my lows, 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 type 1 diabetes I was trying to treat. Several times, so confused with a low blood sugar, I came very close to giving Charlie extra insulin when he didn't need it. I could have killed him. That's what scared me the most.

I had heard about the recent islet transplantation breakthroughs, and I was aware that JDRF was investing more money into research on islet transplantation. But when deciding to participate in the trials, I had a hard time with the fact that the procedure was not being offered to children because of the drugs that the patient must take after the transplant. It felt wrong for me to be cured when Charlie couldn't be. But eventually I realized that helping myself would help him, too. I wanted to be alive for my kids, and I wasn't going to live much longer without a transplant.

Q. What was the transplant operation like?
A. Well, because of the severe shortage of pancreases in the U.S., and with my rare blood type, I spent over two years on the waiting list, hoping for the call. I actually went in to the hospital 10 times before we could go through with the transplant. Sometimes the donor pancreas couldn't be saved, and sometimes the islets weren't healthy enough, so I would have to go back home and wait for another call.

I finally received my first transplant on February 5, 2003, and my second on April 9, 2003. In many cases, you need two transplants in order to receive enough islets. I was called to The Methodist Hospital in Houston, and the insulin-producing islet cells were taken from a donor pancreas and put into an IV bag. While this was being done, I changed into my gown, the doctor fed a small needle into a vein in my liver, and the cells dripped into me. I was in the surgery room for a total of 20 minutes, and I was awake 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?!" Just 30 hours after the transplant, I was sent home.

Q. How has your life changed since you received the transplant?
A. In every possible way! Since my transplant, I no longer need to take insulin. To give you a sense of what a huge change that is, in the 35 years that I had juvenile diabetes, I took 255,500 units of insulin and pricked my fingers 56,210 times. For the first 12 years that I had juvenile diabetes, I tested my urine 21,900 times!

Another amazing result is that many of the complications I had before the transplant are now gone. Nausea, exhaustion, confusion, un-consciousness, foot pain, and a lot of fear are all gone, and I don't have any side effects. Having energy, clear thoughts, and not feeling fearful of endangering my children has been wonderful. Juvenile diabetes doesn't define me anymore. I truly have received the gift of a lifetime.

Q. Does Charlie ask you when he will be cured? What do you tell him? 
A. Charlie doesn't really ask a lot of questions about being cured. He knows that we are working hard and that we will find a cure, but that we have to have more money for JDRF for research.

When people do ask me about the cure, I tell them that we have come a very long way, to the point where we have cured some people, like me. That shows me that JDRF is putting all the pieces in place. We know what to do to get to a cure, and we are well on our way to getting there. Now is the time that everybody needs to push hard, in whatever way they can, to get us to our destination. We are winning this battle. Don't lose hope!