Wednesday, April 1, 2015

Time to Kill the Beast

Last week, I was privileged to participate in JDRF Government Day.  This is an event sponsored by JDRF in which advocates from across the country meet in Washington D.C. Over the course of four days we learned about research progress, networked with other T1 D advocates, and met with our respective state's elected officials.

On the first night, we stood and introduced ourselves and spoke of our connection to T1D.  I fought back tears more than once as roughly 200 people told their stories.  We heard of success stories and we heard of losses.  Despite the resilience shown by all present, the message is clear, this story of T1D needs a happy ending and the sooner, the better.

We heard that The Special Diabetes Program (SDP) is making progress.  So much so that Dr. Aaron Kowalski- JDRF's Chief Mission Officer and VP of Research stated, "We have this disease on the run."  As a person living with diabetes himself, he has a reason to give chase.  Since the inception of the SDP in 1997, we have seen the improved technology including better CGM's and the Artificial Pancreas.   However, what about the person who doesn't want to be attached to a device 24/7?  To that end, we saw an Encapsulation device as small as a band-aid that could potentially be implanted under the skin and allow a person to live insulin free for up to two years.  We heard of research projects such as The Environmental Determinants of Diabetes in the Young (TEDDY) that has made incredible strides in determining the causes and progression of T1.  SDP researchers have identified over 40 genes associated with T1D bringing the total to 50 known gene regions- up from only 3 just a few years ago.

While Type 1 and Type 2 are two different animals, SDP research has benefited both in terms of preventing complications.  Continuous Glucose Monitors (CGM) and the artificial pancreas systems can improve glucose control in both populations, thus lowering long term complications such as eye and kidney disease.  SDP is accelerating a treatment which can reverse vision loss in patients with diabetic macular edema.

The SDP not only benefits people with T1D but also those with other autoimmune diseases Collectively, autoimmune diseases affect approximately 5-8% of the population.  Some of the genes associated with T1 are also associated with other autoimmune diseases.  Research and therapies effective for T1 could have a positive effect on other autoimmune diseases.  This little bit of information about autoimmune diseases is particularly personal to me as my immediate family seems to collect them like other people collect stamps!

We spoke with our members of the House and the Senate to bring our stories home, to demonstrate the progress and the need for SDP to continue and to ask them to please vote to extend the SDP, which is set to expire in September 2015.  It is currently attached to the "doc fix" and will potentially be renewed for 2 years.  Our voices were heard as the House overwhelming voted in favor of HR 2. The Senate will continue to discuss their corresponding bill after the Easter break and hopefully bring the bipartisan bill to a quick Yay vote.

While all of this progress is hopeful, the ending to this story cannot come quickly enough.   Yesterday, my husband sent me a text telling me that his blood sugar was 395!  I responded with an inappropriate statement,  thinking to myself he was one day early for an April Fool's joke and a terrible one at that! But, no-- it was no joke.  Troy had a kidney transplant nearly 10 years ago as the result of a different autoimmune disorder (IgA Nephropathy).  Things have been going great-- until this complication.  We had been told that prolonged use of Prednisone and Prograf could lead to diabetes.  For the last few weeks he has been really tired, had blurred vision, and just generally not feeling well.  His regular blood work came back with good news for the kidney but bad news for the pancreas.  After seeing his elevated fasting blood sugar, an A1c was ordered.  The result was a whopping 10.2-- officially the highest in the house- and not the news we wanted to hear!  However, knowing what we know about hypoglycemia, we should have seen this coming.  Today he became the 4th insulin user in our house and our diabetes arsenal has taken over another shelf.   Text messages about missing socks have become text messages about blood sugars and sliding scales.  After day one we both,  especially Troy,  have a renewed respect for what our kids have been handling for years.   If all goes well, his diabetes adventure will be short lived; for our kids, it's a ferris wheel ride they may never get off.

Despite the progress being made and the hope on the horizon, regardless of its type, diabetes is an ugly disease.  It's mean, it's painful, it's aggressive, it's unpredictable, it's deadly and it's time to kill the beast.

 Follow the link to learn more about the SDP and what you can do to help   JDRF is currently sponsoring more than $568 million in scientific research in 17 countries including 50 clinical trials.  This link will tell you other ways you can be involved  For my running friends, JDRF is a charity for this year's Fargo Marathon.  If you plan to run in any of the races, consider joining their team.

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