Why Advocacy Counts and Makes a Difference


IF ONE MORE IGNORANT PERSON tells me that they have a cure for Type1 Diabetes, I am really going to scream!!! While shopping, I was discussing health and wellness with a holistic healer.  For whatever reason, when I mentioned my brother engages in a wellness regimen to manage his illness, she told me that there was a cure!  When I said, “he is TYPE1 – Insulin Dependent, NOT Type2,” she assured me I was wrong and that he really does not need insulin but diet and exercise.  AS IF I do not know what I am talking about, having personally dealt with the disease for 10 years.

In an earlier post, When a Cause Hits Home – Volunteering with a Personal Purpose, I described my brother’s struggle with Type1 Diabetes.  An autoimmune disease, his life DEPENDS on daily doses of insulin and blood sugar measurements through finger sticks.  His pancreas DOES NOT function.  He did not acquire diabetes through diet or any behavior of his own.  Doctors, meaning Endocrinologists, believe that an environmental trigger stopped his pancreas from working, and he was genetically predisposed to Type1.  He has never been obese or overweight, in fact, at 6’0, he struggles to maintain a weight over 140 lbs.  Anyone who would suggest he STOP using insulin very ignorant about the disease. 

Sadly, this is not the first person to tell me that my Type1 brother does not need insulin to survive. Maybe these people would like to see what happened when he had a bad batch of insulin. He ended up in ICU for 5 days and nearly died. 

My rant has a point.  Advocacy and education about YOUR cause is vital to the public receiving information about the issue at hand.  Potential donors, volunteers, and supporters MUST know the FACTS and MYTHS about issues, such as Type1.  Otherwise, they will not understand the urgency families are experiencing as everyday 80 more people are diagnosed with this life threatening disease.   Everything on the outside seems fine, but inside the lives of these families there is struggle, fear, depression, anxiety, and a glimmer of hope…that one day…their loved one will be cured.  

Advocating and educating the public and other stakeholders does not mean you have to march on Washington and storm the state house.  It can be as simple as making a YouTube video about your personal experience, writing a guest blog for an organization working on your cause, sharing information through social media contacts to raise awareness, and correcting ignorant people whose suggestions could harm a loved one, should you follow the advice.

JDRF, the leading organization fighting for a cure for Type1 has done a great job in encouraging families to share their personal experiences with the disease on YouTube.  In turn, these videos are shared on Twitter and other social media platforms.  These experiences are personal, inspire others to action, and provide a face for the disease.  You can make a difference through advocacy and education for your cause.  Get involved today!

How are you advocating for YOUR cause?  Please share.  Make YOUR difference in the world…Volunteer!

JDRF

Diabetes Mine

American Diabetes Association

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When a Cause Hits Home – Volunteering with a Personal Purpose

When my brother AJ was a teenager, he wanted to buy a new guitar. Not just ANY guitar, an expensive one.  He counted the earnings from his part-time job, earned money doing odd jobs, and still came up short.  When all else failed, he suggested selling his pancreas on the black market!  That may sound hubris and odd to anyone who is NOT a teenager, or Type 1, but his pancreas does not work.  See, he has Type 1 Diabetes, and only a cure will make the difference.

Today, AJ turns 25 years old.  When he was diagnosed with T1D in 2003, experts believed there would be a cure by the time he was in his late 20s.  Now that he is officially at the midpoint, and there is not a cure in sight, fighting harder is my family’s only choice.

Ten years ago, AJ, an eagle scout, was at camp for a week in the wilderness.  On the second day, he became violently ill while replenishing his fluids with Gatorade.  By Saturday morning, when he came home, he had physically dropped over 20 lbs.  YES, 20 lbs.  In the middle of the night, he was so sick and his heart was beating so hard that he told my parents he thought he was dying.  Living in the country, they rushed him to the hospital.  Upon arrival he had lost vision and could not walk on his own.  When his blood sugar was 800 mg/dL (normal is 90-130mg/dL0) and his blood pressure was severe, he was diagnosed with Type 1 Diabetes.  At 5’8, he was 88 lbs.

That was the beginning. His week-long stay in ICU included IVs, needle sticks, finger pokes, blood sugar measuring, and a completely new eating lifestyle.  As a teenager, his active endocrine system produced emotional highs and lows while coping with the physical effects of T1D as well as the emotional impact.  While getting his blood sugar under control, he would become very sick for hours.  If his sugar was low in the morning, he would not wake up…which extended the time he had gone without eating and compounded the problem.  He had to find his way to manage the disease and live like a teenager.  The worst part of it however, was the realization that his dream of becoming an officer in the U.S. Navy was now not possible.

My dream is that researchers will find a cure for T1D before it is too late for AJ’s kidneys and heart.  My great great grandmother died from T1D in 1913, when not a lot was known about the disease, so we have come a long way.  One of my favorite nonprofits, JDRF (formerly Juvenile Diabetes Research Foundation) sponsors events all over the world to raise money for researching a cure.  My local chapter has volunteer opportunities in my area, from working in their office or on an event to serving on the board and soliciting donations.  And there are many more ways ANYONE can make a difference.

Are YOU supporting a cause close to your heart?  Please share.  Make YOUR difference in the World…Volunteer!

Thank you, Shannon Nordmeyer for sharing your personal video about T1D!

JDRF

JDRF – Northern California Inland Chapter

JDRF Volunteer – Get Involved

JDRF NorCal – Get Involved

JDFR NorNV – Get Involved