Our Journey to Hope and Beyond

I grew up around the corner from the National Institutes of Health (NIH). In high school, long ago, I thought that NIH scientists were “bad guys” who mistreated animals in the name of medical research. I later moved to the West Coast and became a registered obstetrical nurse. Over the years, along with sharing the joys of new moms and new babies, I cared for patients with devastating conditions like cancer and quadriplegia, people whose lives could potentially be saved or improved by medical research., Yet it wasn’t until many years later, after moving back to the DC area, that I really began to see the NIH in a new light.

My daughter Svati was diagnosed with type 1 diabetes during her first week of fourth grade, just three days after her ninth birthday. (In the early years, she used to say that it was the worst birthday present she ever received.) Parents never forget that day, but in time, as you begin to live your “new normal” life, the pain recedes.

I remember driving home from our summer vacation a few weeks before the diagnosis, when we had needed to stop so often for bathroom runs. I had wondered if Svati was developing a bladder infection, so I kept making her drink cranberry juice. It wasn’t until a week later, when she came home from school and said that she had had a headache all day and couldn’t stay awake on the bus ride home, that a light bulb went off in my head saying “diabetes?” But I quickly dismissed it.  “Nah, couldn’t be.”

My gut knew then, but my mind did not want to follow. We first checked Svati’s blood sugar on a urine dipstick that I had in my nursing bag.  When it indicated glucose levels off the charts, I still didn’t want to accept it. Maybe the strips were old, I thought. So we checked again, on a glucose meter that I kept for new gestational diabetic patients. Svati read the number on the screen and said, “Mom, it’s 464. Is that normal?” It was then that our lives changed forever.

Suddenly, it became my new mission in life to find a way to preserve whatever insulin-producing capacity Svati’s precious beta cells had left.  It was a wonderful and kind NIH diabetes researcher, Dr. Dave Harlan, who took time out to help me in my desperate search, even talking to me on his cell phone right before giving a presentation at a national conference. Dr. Harlan told me to try to keep Svati’s blood glucose under 200 mg/dL to fend off further beta cell destruction. As most of you know, however, that’s not always so easy!  I took a month off work to research what was being done all over the world to preserve beta cell function and/or to miraculously find a cure!  I made a lot of phone calls, talked to many interesting people, and learned quite a bit in the process, finally settling on what looked like a promising research study that seemed to have the best safety profile.  It had just been started by a neurology researcher, Dr. Staley Brod in Houston, who had been studying mice with multiple sclerosis, another autoimmune disorder.  Interestingly, he had found that treating the mice with alpha interferon for their MS also seemed to boost their insulin production.

Because I am a nurse, I thought that perhaps I could convince Dr. Brod to let me draw my daughter’s blood work myself and send it to his lab in Houston, thereby avoiding the travel back and forth to participate in the study, but it just doesn’t work that way. So he made a deal with me.  If I could find a collaborator in our area to provide a site for the study, we could go there instead. 

Dr. Harlan came through again for me and got the ball rolling. Soon after, the NIH became a site for the study, with Dr. Kristina Rother taking it on as the primary investigator there. Svati was in that study for the next year, during which we made several visits to “Building Ten,” our name for the Clinical Center.  We turned those visits, which occurred about every three months, into special “Mom and me” events.  I especially relished the individual attention and thorough answers I received to all of my diabetes-related questions, and we developed a special friendship with Dr. Rother that continues to this day. Having another set of eyes watching over your child has its benefits. We had many productive conversations about the latest in diabetes research and technology, not only that first year, but also over the course of the next nine years as my daughter participated in six more interesting research studies.

Because Svati had such a positive experience with that first study, she has always been happy to volunteer for others. Doing the trials strengthened our bond, increased her sense of self-esteem, and gave her extra fodder for school science projects, something all our type 1 kids have in abundance! When she had a ninth-grade science project that required her to shadow a researcher, she knew just the person to pick, only no blood draws this time!

Although participating in clinical trials is beneficial for us, it is different for everyone. You must look at your own situation and consider all the factors.  The good news is that people who participate in clinical trials are protected by very stringent rules.  Clear guidelines dictate how a research trial must be carried out, and investigational review boards (IRBs) oversee everything.  Many different types of research are out there, ranging from questionnaires by college students about type 1 family dynamics to longer clinical trials.  You can find out about them at www.clinicaltrials.gov  The JDRF Clinical Trials Connection also provides a customized search of a huge database for diabetes trials (www.trials.jdrf.org), and a number of type 1 studies are listed on the Children with Diabetes website under Studies and Surveys (www.childrenwithdiabetes.com/studies).

At the American Association of Diabetes Educators (AADE) meeting last August, I discovered an exciting study being carried out by Diamyd, a company based in Sweden (which has one of the highest rates of type 1 diabetes in the world). Diamyd is investigating GAD, a protein that has shown promise for preserving insulin-producing beta cells. The Phase 3 study has already been fully recruited in Europe, with 320 subjects, and it is now being conducted with newly diagnosed kids at over 30 sites across the U.S. (www.diaprevent.diamyd.com).

After I went on to become a CDE, my daughter and I had many opportunities to become involved in diabetes advocacy work (as well as lots of fun at diabetes camp, where she went as a camper and I worked in the infirmary). Svati learned the value of getting involved to make a difference at a young age and has carried that with her to this day. Through diabetes, she received public speaking experience and her first real job! She also realized the importance of regular exercise and became a runner, completing her first triathalon this past summer.  And she made her parents happy by receiving a Diabetes Scholars Foundation scholarship, which helped with her first year’s college costs (www.diabetesscholars.org).  

Probably the main reason that people participate in medical research comes down to one word: HOPE.  I know that hope was what I was looking for when Svati was diagnosed, and it’s what every person dealing with a chronic disease needs in order to cope.  And now I have come full circle on this journey because I am working not only to preserve my own daughter’s beta cells, but also to help other newly diagnosed kids save theirs.

It seems to me that the people who adjust most effectively to diabetes are those who are working to do something about it.  They are engaged in it in some way and are using it to their benefit wherever possible. Today there is more promise in the field of diabetes research than ever before. It is enlightened self-interest to get involved. As it says on an old diabetes camp calendar hanging in my daughter’s closet, “I have diabetes, but it doesn’t have me.”  So don’t let this disease kick you around. Take control and do something!  That has made all the difference for us.

Leave a Reply

Your email address will not be published. Required fields are marked *

Time limit is exhausted. Please reload CAPTCHA.