We R the Cure

Seeking Cures and Cheating Destiny


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A Parent’s View: The Sugar Highs And Lows During A 20-year Diabetes Journey

Lauri and her son, Drew, at JMU in Harrisonburg, VA

Lauri, right, and her son, Drew, celebrate his sophomore year at James Madison University.

By Lauri Savage

My son was diagnosed with Type 1 diabetes at the age of 15 months.  His onset was sudden, severe and life-threatening.  Although living with diabetes is challenging, nothing compares to the fear of almost losing a loved one.  Our 20-year family journey with diabetes provides me, a parent, with a unique perspective and I hope to share this with you.

When my son was a baby, I vividly recall people saying, “How can you give a baby shots?” 

I guarantee any parent could give their child a shot if it was a means of keeping them alive.  With Type 1 diabetes, the pancreas is not producing insulin, so injections through syringes or an insulin pump are needed to live.

As my son went through his childhood, we found the right balance of vigilance and living life.  Here is what I mean by this:  it is critical for people with diabetes to keep their blood glucose levels in the right range.  Either a very low blood glucose level or a very high blood glucose levels can result in a medical emergency.   With a low blood sugar, giving the person sugar through glucose tables or another quick acting source restores the person to normalcy over time.  With a high blood sugar, additional insulin is needed.  In the extreme case, without proper medical management, either a very low or high blood sugar could have a serious outcome.

As the parent of a child with diabetes, you must strike a balance between monitoring every morsel your child consumes and allowing high sugar or high carbohydrate foods to be consumed.  No longer is it true that sweets and treats can’t be enjoyed, but moderation is key.  Physical activity is beneficial for all of us, and is good for a child with diabetes too.  But this also involves testing blood glucose before, during and after sports and keeping levels in the right range.

Before you know it, the teen-age years have arrived.  By this point, my son had gained great independence in managing his diabetes, testing his own blood glucose level and administering insulin with supervision.  Along the way, he was spending nights away from home with friends.  This required making sure that the parents had a general understanding of diabetes and how to respond if an emergency arose.  Often my husband or I would have to drop by during a sleep over just to monitor our son’s diabetes.

Fast forward to my son getting his driver’s license and the prospect of teen parties and imagine more potential worries.  Luckily, my son has always been responsible and takes good care of his diabetes.  That doesn’t mean that we did not have a few medical emergencies over the 20 years of his living with this disease.  It is just impossible to be always be prepared, but fortunately things always worked out

Of course, all of this pales in comparison to the day when you bring your almost 18 year-old to college. I’ll cover this in my next post on We R the Cure.

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Free Classes Offered For Non Pumpers And Pumpers in Richmond: Let’s Get Started

Break Free From Injections:  Information for Adults

Presenter: Joe Manriquez
Location: Animas Office
2727 Enterprise Parkway, Suite 102
Glen Allen, VA 23294
Date/Time: To sign up and schedule an informational class, please call or email Joe Manriquez
at 804-548-9093 or jmanriq9@its.jnj.com

AND

Carbohydrate Counting:  Your Daily Drills

Presenter: Katie Conschafter MS, RD, CDE, Clinical Manager
Location: Animas Office
2727 Enterprise Parkway, Suite 102
Glen Allen, VA 23294
Date: Thursdays – 2012 – February 16th, March 15th, April 19th,
May 17th, June 21st, July 19th, August 16th,
September 20th, October 18th, November 15th, OR December 20th
Time: 4:30pm – 6:00pm

RSVP: Katie Conschafter – Kconscha@its.jnj.com or 804-310-5667

AND

Using Advanced Features for Smart Pumping

Presenter: Katie Conschafter MS, RD, CDE, Clinical Manager
Location: Animas Office
2727 Enterprise Parkway, Suite 102
Glen Allen, VA 23294
Date: 2012 – February 3rd, March 6th, April 3rd,
May 1st, June 5th, July 10th, August 7th,
September 4th, October 2nd, November 6th, OR December 4th
Time: 5:00pm – 6:30pm

RSVP: Katie Conschafter – Kconscha@its.jnj.com or 804-310-5667

 


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Interested in a clinical trial? Check out these starting points

  • Type 1 Diabetes TrialNet is a group of studies looking at the prevention and early treatment of type 1 diabetes. This site provides information about ongoing and completed TrialNet Studies.TrialNet performs trials for newly diagnosed or at risk individuals for type 1 diabetes.
  • The Immune Tolerance Network (ITN) conducts clinical trials and tolerance assay studies in the following disease areas: Transplantation (Islet, Kidney, Liver), Autoimmune Diseases, and Allergy & Asthma. Information is provided on current clinical trials in new onset type 1 diabetes.
  • ClinicalTrials.gov also lists NIH-sponsored trials that have been scientifically reviewed through NIH mechanisms and approved by government council.
  • Children with Diabetes lists a number of trials actively seeking participants.
  • CenterWatch also includes geographic listings of current trials regarding type 1 diabetes.


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Discovery of Insulin: It’s not a cure, but it sure beats death

This blog is dedicated to a future of high tech products, better treatment solutions and, one day, real cures for persons living with autoimmune disorders like Type 1 diabetes. Before we can look forward, we need to stop and pay our respect to two Canadians and their laboratory dogs!

This month marks the 90th anniversary of the discovery of insulin by Canadian scientists Fred Banting and Charles Best.

As a person with Type 1 diabetes, I owe these men and many other scientists my life. Actually, about 4 million people living today are in debt to these trailblazers.

Fred Banting and Charles Best Discover Insulin

Canadian Scientists Fred Banting and Charles Best Discovered Insulin in 1922. Photo courtesy University of Toronto.

Although it is true — Insulin is not a cure for Type 1 diabetes — imagine the starvation deaths  suffered before the discovery of insulin in 1922. In fact, my favorite diabetes book, “Cheating Destiny,” writer James S. Hirsch tells the horror stories of children and adults living a “disgusting and painful” death from diabetes. In the early 1900s, doctors knew that sugar worsened the condition of diabetic patients and that the most effective treatment was to put the patients on very strict diets where sugar intake was limited.  At best, this treatment would buy patients a few extra years, but it never saved them. In some cases, the diets even caused patients to die of starvation.

“The Greek physician Aretaeus of Cappadocia offered the first accurate account of diabetes in the first century A.D., noting the distinctively gruesome fashion in which some patients withered away. He called their demise, the ‘melting down of the flesh and limbs into urine. Life is disgusting and painful.’ Diabetes’ signature symptom was polyuria or excessive urine. When blood sugar levels rise, the body draws water from its tissues to purge the sugar through its urine.”

This is why children and adults may lose 50% or more of their body weight in the initial weeks of the autoimmune disorder hitting. Your body is, basically, releasing excess sugar AND the food you need to stay alive. In my case, I lost 16-17 pounds in about 4 to 6 weeks before I finally dragged myself to Dr. G. V. Puster for my diagnosis! I made many rushed trips — running at full speed — to get to a bath room. And hoping that I would not wet my pants. It was a hit-or-miss race. Ugh. Fun times.

So, let’s celebrate the discovery of insulin. One of the most revolutionary moments in medicine. Though it took some time to work out proper dosages and to develop manufacturing processes to make enough insulin of consistent strength and purity, the introduction of insulin seemed literally like a miracle. One year the disease was an automatic death sentence; the next, people — even children — had hopes of living full and productive lives even with the disease. Wellcome's insulin Ad in 1923

Now, we stand on the water’s edge. Waiting for the next miracle. If you want to participate in miracles, then you need to get involved in a human clinical trial. Miracles like the artificial pancreas, beta cell regeneration and smart insulin are sitting on the horizon. So don’t wait on the shoreline. Jump in. Become a “research dog.”

Coming up next week, I’ll post details on how to find and enroll in a clinical trial.


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Prototype AP “Apps” In Action @ UVA

A Droid Cell Phone -- Running AP system with Red, Yellow, Green Traffic Lights

Dr. Patrick Keith-Hynes (University of Virginia, Charlottesville, VA) and Dr. Claudio Cobelli (University of Padova, Padova, Italy) led the first of two artificial pancreas demonstrations at the 2011 Diabetes Technology Conference*. Their research team has developed a way to wirelessly connect a Dexcom Seven Plus CGM, an Insulet OmniPod pump, and an Android cell phone application that runs the system. (We note that the system is still a prototype and is designed for research, not commercial use. Still, it was cool to see, and it helped us get a sense of what upcoming commercialized devices might look like).

The home screen of the UVA research app features a traffic light icon that shows people whether their glucose is in the target range (green light), slightly too high or low (yellow light), or in more dangerous territory (red light) – a quick, intuitive, and cool-sounding way for someone to get a sense of things with one look at the phone. People can also tell the system when they are about to start exercising and they can manually dial in mealtime boluses (this is an example of a hybrid artificial pancreas, which provides automated basal glucose control but still requires mealtime dosing of insulin).

On a positive note, the system is designed to work with a variety of different insulin pumps, CGM sensors, or software algorithms. Thus it can be widely used by researchers around the world. So far the system has been tested twice outside the hospital, once in Italy and once in France, and overall it performed well both times.

Article Reprinted from DiaTribe Blog Dec. 2011 following annual technology conference in San Francisco, CA.


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Diabetes Costs Money, Takes Lives

Each year, more than 15,000 children and 15,000 adults, approximately 80 people per day, are diagnosed with T1D in the U.S?!

  • Type 1 affects as many as 3 million people in the U.S. alone, and results in nearly $15 billion in healthcare costs each year.
  • Contrary to the misconception: 85 percent of people living with type 1 diabetes are adults. Obviously, a lot of young children have grown up. Now they are adults with Type 1.
  • The average annual medical costs of kids and teens with diabetes is $9,000, compared to $1,500 for those who don’t have diabetes.
  • The rate of type 1 diabetes incidence among children under the age of 14 is estimated to increase by 3% annually worldwide.

And the climax:

  • 1 in 20 people, an estimated 2-4 percent and 6 percent in patients younger than 40 years old, will die from severe hypoglycemia.  That’s having a low blood sugar that produces seizures, coma and death. Of the estimated 3 million people in the U.S. with type 1 diabetes, that’s approximately 150,000 people. That’s like wiping out Chattanooga, Tenn. or Rockford, Ill. — wiping them right off the map.
  • So, that’s why we push the FDA, our family, friends and total strangers — for greater awareness and more money. We need better technology, new solutions and real Cures. The future’s so bright, we gotta wear shades. But if you’re living with diabetes, it’s not coming fast enough. Will you help?  We R the Cure.


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Autoimmune Disorders: A Definition

An autoimmune disorder is a condition that occurs when the immune system mistakenly attacks and destroys healthy body tissue.

Normally the immune system’s white blood cells help protect the body from harmful substances, called antigens. Examples of antigens include bacteria, viruses, cancer cells, toxins, and blood or tissues from another person or species. The immune system produces antibodies that destroy these harmful substances. In patients with an autoimmune disorder, the immune system can’t tell the difference between healthy body tissue and antigens. The result is an immune response that destroys normal body tissues. With autoimmune disorders, the immune system reacts to normal body tissues that it would normally ignore.

What causes the immune system to no longer tell the difference between healthy body tissues and antigens is unknown. One theory is that some microorganisms (such as bacteria or viruses) or drugs may trigger some of these changes, especially in people who have genes that make them more likely to get autoimmune disorders.  There are more than 80 different types of autoimmune disorders. Here is a very small list of diseases that fall into the autoimmune category:

  • alopecia areata
  • autoimmune hemolytic anemia
  • autoimmune hepatitis
  • Crohn’s disease
  • dermatomyositis
  • diabetes (type 1)
  • Graves’ disease
  • Guillain-Barré syndrome
  • multiple sclerosis
  • psoriasis
  • psoriatic arthritis
  • rheumatoid arthritis
  • systemic lupus erythematosus
  • thyroiditis

For more complete information about Autoimmune Disorders, check out the National Institutes of Health website. It’s a great place to start your research.