Julie Colvin has written a book that is one part memoir, one part diabetes advocacy. She gives readers an understanding of her journey in caring for her daughter’s diabetes, as well as her growing role as a T1 advocate.
By: John Parkinson, Clinical Content Coordinator, DiabetesCare.net
Anyone watching mothers go through their days know they wear many hats and are constantly juggling the needs of their families. Mothers take care of the chores, coordinate their kids’ extracurricular activities, and absorb the emotional battles their children face. And they never, ever, stop watching out for their children - no matter how old they are.
In the case of Julie Colvin, she does all those things for both of her children, and helps her daughter, Emma, in managing her type 1 diabetes. It is this ongoing, daily battle with diabetes that Colvin has found another important purpose: that of T1 advocate.
Colvin (pictured, below, left) has written a book, A Cure for Emma, which takes readers through the emotional spectrum of being a mother of a child who is newly diagnosed with type 1 diabetes. She eloquently describes the deep uncertainty and frustration that comes with trying to keep blood sugars under control, and the never ending love and care for her child throughout the ups and downs of the disease. But A Cure for Emma is more than that; it’s a book for both the mind and the spirit.
Recounting the experiences of her most difficult year leading up to Emma’s diagnosis (The tsunami of ‘04, the death of her dearest friend, and the crash landing of their plane on her first family vacation), Colvin takes us readers on a spiritual adventure while she tries to make sense of the questions diabetes forced upon her family’s life. While Colvin could have stopped there and certainly would have enough material to write about in her book, she takes it a step further and puts on her advocate hat. She is not content with coming to terms with the daily self-management - although she would be the first to say she still has her struggles and fears of what the disease is capable of - she wants to see the end of the scourge: she wants a cure.
In the book, she outlines the research of one particular Boston researcher. Denise Faustman, PhD, MD (pictured, below, right, with Colvin and Colvin's daughter Emma), is a Massachusetts General Hospital scientist who along with a small team has been working on a type 1 diabetes treatment for many years. Dr. Faustman’s promising research utilizes an existing vaccine that has been used as a tuberculosis vaccination and is indicated as a treatment for bladder cancer.
The drug is an inexpensive, generic drug, so there has not been any outside interest from pharmaceutical companies, and overall funding has been limited. However, Colvin is putting her money where her computer keyboard is, and donating 100 percent of her royalties of A Cure for Emma for the first 5 months of sales, or 5,000 copies sold, to Dr. Faustman’s research.
Colvin has also taken her advocacy to the social media realm blogging about her experiences, and creating her own Facebook Page, the “T1 Diabetes Cure - Global Headquarters” page. Her page aims to reach out to the online community and foster an international audience to exchange research and share hope with the front lines of the leading T1 cure organizations- Juvenile Diabetes Research Foundation International (JDRF), Diabetes Research Institute (DRI), TrialNet, and Dr. Faustman.
With Colvin’s book just hitting the market, and her latest advocacy efforts taking off, DiabetesCare.net recently spoke with her to find out her insights into writing the book, her efforts in helping to fund a cure, and her thoughts about when a possible cure might happen.
DiabetesCare.net: Take us through when you first received the diagnosis that Emma had diabetes?
Colvin: We were out for a swim at our local pool when I noticed Emma, who had just turned seven years old, was looking extremely thin to me. I could actually see the definition of her spine poking through her skin, so it was a little bit alarming. Over the next week or so I bulked up her meals thinking maybe she was having a growth spurt, but the more she ate, the thinner she became.
Her drinking increased every time I would give her more food. She would bring four or five cups of water up to her room and line them up on her night stand. Finally, she had an accident one night and wet the bed, which was something she had never done before, even as a toilet-training toddler.
I decided to bring her into our family doctor the next morning.
Her symptoms were so obviously diabetes, but unfortunately it took four more days for Emma to be diagnosed. We live in a small, northern Canadian town so once the diagnosis was made we had to drive two hours south, in wintery conditions, to see a pediatrician at North Bay Hospital. Unfortunately, while trying to contact my mother-in-law on my cell phone, I got into a car accident along the way. Thankfully, no one was hurt and we continued on to the hospital where we spent 5 days learning how to keep Emma alive from that point on.
DiabetesCare.net: In the beginning of her diagnosis, was your writing more of a coping mechanism?
Colvin: I wished I had started writing right away, but I didn’t actually begin writing until a year and a half after she was diagnosed, which is about the same time I started coping with the changes in our lives.
When I began writing, I would often replay certain situations I was going through in my thoughts, and it wasn’t until I would write them down that my mind would become quieter. It quickly became very addictive, almost like my own personal form of mediation. It helped to put things into perspective.
DiabetesCare.net: In your book you talk about having a medical background and how it helped you. Can you give an example of how so?
Colvin: Being an ultrasound technologist for over 10 years, I had many opportunities to point out the pancreas on the ultrasound screen to my patients. I understood how disease processes affect the body, and medical terminology was my daily language.
This obviously is a tremendous advantage when you are faced with a disease as complex as diabetes. I didn’t need to be educated on the anatomy and physiology of this disease, or how important it is to maintain good blood sugar control. I was on board with all of that right out of the gate. But even though I understood what we were up against, I was still completely overwhelmed with the whole gravity of the situation and the grim reality of taking over the role of my daughter’s pancreas. I think that having such a clear understanding actually made things worse in a way. Every single out-of-range blood sugar would make me cringe.
Diabetes Care.net: You have written an honest portrayal of your relationship with your husband and the toll caring for your daughter has had on the relationship. Was it difficult to be so candid?
Colvin: Absolutely. It took a lot of soul searching to choose an honest approach about our journey. I know that there will be many who read this book who have gone through similar situations. In fact, the divorce rate is extremely high for parents of type 1 children due to the 24/7 vigilance and financial burdens this disease brings into the family. In the end, I felt that I wouldn’t be portraying the full and true picture of the impact diabetes had on our lives if I just skimmed over that crucial part of our story.
DiabetesCare.net: You have written this book as part of your advocacy, and you have a blog and you host the T1 Diabetes Cure - Global Headquarters Facebook page. What role does the Internet and being part of the global online community play for people with diabetes and their families?
Colvin: I think it can play a huge role. Being in a small town, we don’t get a lot of opportunities to interact with other T1 families. It’s been a very isolating experience for us from the beginning. Discovering the online community introduced me to countless T1 families eager and willing to talk about the good days and the bad days dealing with type 1. I quickly learned that I was not the only parent getting up every night to check my daughters blood sugar. That I was “normal”. It’s an incredible support system.
The one thing I did find initially was that there was a great deal of negativity and loss of hope, regarding the future of a cure for T1. This is the main reason I started the Facebook page. I believe that joining the T1 community with the top researchers and sharing exciting information on potential cures, has brought a sense of hope and empowerment back to families online. In just the last five months, I’ve seen a real shift in peoples’ attitudes.
DiabetesCare.net: You have adopted holistic medicine methods. Do you see the holistic aspect as care that is applied everyday to people with diabetes?
Colvin: I think that a holistic approach is not applied or taught to most families, particularly when someone is diagnosed with T1, which is unfortunate.
I would love to see holistic and traditional medicine work side by side. Health and balance is important to overall wellness, especially when you have diabetes. The mind is a very powerful component of a holistic approach. A positive attitude toward eating, vitamins, exercise and life in general can definitely help to keep diabetes in check, which will obviously reduce the possibility of long term complications.
DiabetesCare.net: In your book, you talk about how vaccines might be a cause for T1 diabetes, yet you also believe Dr. Faustman’s Bacillus Calmette-Guerin (BCG) vaccine might be the best chance for a possible cure. How do you reconcile these two opposing points of view?
Colvin: Certainly type 1 diabetes has been around long before vaccines so it would not be the sole cause of T1, but I do feel that the incredible increase of immunizations we subject our children to could in fact be overburdening our children’s immune systems at their most crucial phase of development; especially since 1990, when vaccines tripled and Autism and autoimmune disease became epidemic. To me, a little logic and common sense needs to be applied with the quantity and frequency of this otherwise very useful tool.
There have been many wonderful outcomes with vaccines– like smallpox for example – the first infectious disease to have been eradicated globally, and who knows, perhaps BCG will be another incredible achievement for eliminating diabetes. I always try to do my best not to stray too far to one opinion over another - balance is always the key for me and that includes vaccine schedules.
DiabetesCare.net: Emma is going to be 13 this year, and probably is starting to become more independent with self-management of her diabetes, which is very different from where you started this journey. Are you prepared for the transition for when she is fully independent and is caring for herself completely?
Colvin: No, not really. I don’t think I will ever truly disconnect from looking out for her, she still relies on me a great deal to help her maintain good control at the moment. This is such a relentless disease and never takes a break - ever. I don’t want her to feel that she will have to do this alone, although I know that the day will come that she will want to. I believe the only time I will truly be at ease with Emma’s upcoming independence, will be the day she is cured from this disease.
DiabetesCare.net: How would you characterize your thoughts about a cure? Do you believe it will absolutely happen? If so, when?
Colvin: Yes, I believe it absolutely will happen. Based on the length of time trials take for various promising treatments to reach the public, I’d say between 10 and 14 years, but hopefully sooner. With the technology happening out there, what used to take 100 years takes 10, and what used to take 10 years, takes one. Things move in leaps and bounds, and I definitely think there is going to be a cure.
DiabetesCare.net: Aside from a finite cure, would you be content if medical science developed devices, medicines, or treatments to make life more manageable for Emma where you would not be as concerned about possible complications like diabetic ketoacidosis or some other possible medical emergency?
Colvin: I would be content and grateful to use them yes, but I wouldn’t give up hope of a complete release from the burdens of this disease.
For anyone interested in purchasing Colvin’s book, A Cure for Emma, click here. To visit Colvin’s Facebook page, click here. And to read more about Dr. Faustman’s work and her efforts to raise funding for her continued work, click here for a past story on DiabetesCare.net.
Originally posted by DiabetesCare.net on August 19, 2011.