Embracing My Second Chance at Life

October 21st, 2008

Michigan-based Leeanne Marie Stephenson’s Web site can be reached at http://www.lmstephenson.com

My introduction into the world of diabetes occurred long ago, when I was diagnosed with brittle diabetes at the age of six. I spent the majority of my childhood in the hospital. There, my doctors, nurses, and nutritionists taught me how to balance my food intake and insulin injections so that I could lead a somewhat normal life.

I was so impressed by their patience, sensitivity, and positive can-do attitude that I wanted to become part of their care-giving community, and I became a registered nurse. After graduating with honors from Mercy Central School of Nursing in Grand Rapids, Michigan, I secured a position as a registered nurse at Blodgett Hospital.

Over the next 10 years, I married my high school sweetheart and started a family. Periodically I changed jobs to meet the demands of parenthood and family life. Then my life took a dramatic turn as I was diagnosed with kidney failure due to my diabetes. The prognosis was less than promising. As my physical condition deteriorated, I was forced to give up my career as a nurse. Fatigue and weakness became my entire world as I underwent dialysis treatments.

Once again, I was on the receiving end of medical care. Desperate and determined to remain connected to this wonderful profession, I started writing a romance novel based on the experiences I had encountered as a nurse. When the days that lay ahead of me seemed impossible to face, I did not allow my tears to compromise my strength.

Instead of giving up during the darkest time in my life, I drew on the love that surrounded me from my wonderful husband and family. When I wrote, I was released from my physical problems and taken back into the world of nursing, which I love so much. Romantic stories can always release us from the problems of real life. They send us into a fantasy world where our imaginations can soar. I strove to take my readers and myself into that world. Thus was born my book, “A Prescription for Love. ”

This book is very special because it represents the strong love that surrounded me and motivated me throughout my lowest point. The one driving force in my life was to be there for my family, especially my precious children. By example, I demonstrated to them that when adversity is overwhelming, you still have to endure. I reached deep inside myself and drew upon my core values of perseverance and unfaltering resolve to overcome the obstacles in my life and achieve one of my dreams!

After a year on dialysis, I was told I could have a kidney transplant. My wonderful brother stepped forward and gave me the gift of life. From that moment on, my whole world changed for the better, and I eagerly embraced this second chance at life. When I felt well enough, I set about getting my romance story published so that I could be an inspirational example of what can be accomplished when life seems overwhelmingly hopeless.

Story from: Diabetes Health

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American Idol’s Elliott Yamin Brings Diabetes Message to Millions

October 20th, 2008

Elliott performs his latest hit, “Movin’ On,” at the World Diabetes Day celebration in Manhattan.

It has been rags to riches for singer Elliott Yamin. With his naturally soulful singing voice, listeners feel his raw emotion and they like it. When you hear him, you know immediately that few guys in any musical genre sing with this kind of authenticity.

There’s also an innocence about him. Watching Yamin grow from nobody to somebody, while carrying his diabetes proudly, has inspired diabetics everywhere.

In a true Cinderella story, Yamin went from being a pharmacy clerk in early 2006 to international singing sensation in a matter of months. His singing talent was recognized when viewers voted him to (almost) the top spot on the television show American Idol. Though he came in third, he has since gone on to eclipse the first- and second-place winners, and is being touted as perhaps one of the greatest of a new generation of male singers.

Yamin faced a huge challenge in wooing the judges to pick him to from among the tens of thousands of other contestants who turned out to audition for American Idol. Although he was shy, the judges quickly saw a very friendly and easygoing 28-year-old with a sultry, smooth voice well suited to the genres of rock, pop, soul, R&B and jazz.

Yamin had sung karaoke as a teen, which was how he had discovered his own talent. The untrained youth began singing in local bands and in amateur venues, and his influences came to include the likes of Whitney Houston, Stevie Wonder, Tony Bennett and Ray Charles. While working as a pharmacy clerk, he left his job to audition for American Idol on the advice of his friends, but he had little idea of where he was really heading.

Diagnosed With Diabetes

Yamin was not a stranger to facing great challenges. The Richmond, Va, local was diagnosed with diabetes at 16 - just two years after his parents divorced.

“I just knew I wasn’t feeling right,” Yamin says. “It was about a two-and-a-half week period leading up to my diagnosis that I was just feeling totally run down and lethargic. I was urinating every hour, I was always thirsty, my breath was really stinky, all of my joints would constantly ache, my mouth was dry. I just didn’t know what was going on with me.”

Yamin told his mother of his symptoms on a Sunday night.

“She has type 2 diabetes and she recognized the symptoms,” he explains. “She got her meter right away. She tested me at 860 mg/dl and she became frantic and called the physician.”

The family lived in a convenient location right behind the hospital, he said. “We went to the emergency room and I ended up spending four days in the hospital.”

The news did not sit well with Yamin. Like most teenagers he enjoyed hanging out with his friends, cruising in cars, dating girls and living a normal life. He did not want to take multiple insulin injections and finger sticks daily for blood glucose readings.

“I was very angry,” he says of the time following his diagnosis. “I was in denial. I didn’t want to believe I had the disease. I kept wondering, ‘how did I go from being an average kid without too many worries or concerns to having this incurable lifelong  disease?’”

The reaction to his diagnosis, along with normal teenage defiance, spelled out disaster for his diabetes control.

“I got really rebellious. I didn’t want to take my insulin and I didn’t want to believe I actually had diabetes,” he says. “I was pissed. I thought the future was grim and I wouldn’t be able to do the things I always wanted to do.”

It wasn’t long before he realized he needed to take control of his condition in order to feel good and have energy.

“I learned very abruptly when I was diagnosed that I had to get a grip on my diabetes or I wouldn’t live very long,” says Yamin, who made several trips to the emergency room before taking better control of his diabetes.

After five years of taking multiple daily injections Yamin started using an insulin pump at 21.

“I think once I got on the pump it really changed my view on diabetes and on how I could take care of myself,” he says. “I love it.”

Friends Spur Him on to Idol

It was the urging of his friends that prompted Yamin to audition for American Idol, singing Leon Russell’s “A Song for You.” Although the audition never hit the air, the judges moved him forward to the finals based on his obvious talent. American Idol judge Simon Cowell is quoted as having called Yamin “potentially the best male vocalist ever” on the show. After Yamin performed “A Song for You,” Cowell said his performance was the equivalent of someone teaching a “vocal master class.”

Yamin left the show following one of its tightest races - each of three top contestants earned nearly the same percentage score from viewers. Though he only came in third, the show earned Yamin the recognition he deserved. Soon came a recording contract with Hickory Records and talk show appearances that included the Tonight Show, Live with Regis and Kelly, and the Fox News Channel. Since then, his self-titled debut, “Yamin,” has turned gold with a single (”Wait for You”) that has made number 20 on the Billboard Top 100.

When he’s not on the road touring or promoting a show, Yamin says he tries to eat healthy foods in addition to testing his blood glucose often, although it’s not easy. “I try eating a lot of salads and stay away from fried stuff ,” he says. “It’s not really a set diet every day. I certainly have more access to better foods when I’m at home. I’m trying to increase my protein intake level. I want to try to put on some muscle.”

Romance

When it comes to muscle and his physical appearance, Yamin says he is pretty secure now - but it wasn’t always that way. He says that having an insulin pump hasn’t harmed his love life.

“Diabetes doesn’t affect my relationships with women at all. I was a little apprehensive about taking my shirt off around girls at first,” he says. “It’s awkward looking to have a third nipple on your stomach - the infusion set for my pump - and it’s hard for people to get their minds around that it’s something I’m always going to have.

“Everybody has supported it. The only thing that kind of sucks is that I can’t really sit in the hot tub too long because the adhesive around my pump site gets really soggy. One of the disadvantages is the heat wears it off. If there is a hot tub backstage after a show I can’t partake, or, at least not for very long.”

Regimen on the Road

The ideal daily regimen for optimal control is not easy on the road, says Yamin, who has been traveling at least seven months out of the past year.

“No matter how busy my schedule gets, I still test around three or four times a day,” he says. “Beyond that, I just test as much as possible and adjust my pump according to what I’m eating. I count carbohydrates and try to watch what I eat.”

It’s very important to have good blood glucose control before going on stage, says Yamin, who tests with his meter before and after going on stage. Hypoglycemia on stage could mean devastating effects on a performance - and not just because of the low blood glucose level, but also because it’s hard to get up fast in front of a waiting audience.

“I like to be around 160 mg/dl before I go on, and a lot of times when I come off it’s higher because of the level of good stress, or adrenaline, and anxiety,” he says.

One time this was not the case.

“Just a few months ago we were in Vancouver and I was doing a show there and I stepped on stage, opened up with the first song and I felt my blood glucose dipping down pretty low,” Yamin explains of the incident. “I asked somebody to go grab me a couple of Pepsis and I finished the first song. But, between the first two songs I sucked both of them down pretty quick. I had to correct my blood glucose fast.”

He explained to his audience what was going on at that point - openness about his diabetes with his fans has always been a strength for Yamin, from his first American Idol performance when he was very clear with the judges about his disease.

The problem came once he was done drinking.

“I drank the two Pepsis very fast. You don’t really want to drink carbonated beverages on stage,” he says. “It was hard not to burp on stage after that. It was ugly, man. It was just ugly. I kept having to pull away from the mike to burp.”

Hypoglycemic episodes are not common for Yamin on stage.

“I notice my blood glucose level gets higher on the road,” he says. “I’ve been on the road maybe a total of seven months, adding everything up on three tours.”

There isn’t always time on the road to do the exercise he would like to.

“I go to bed around 4 or 5 in the morning and wake up early to do morning radio shows, do sound checks, meet and greets on the shows,” Yamin explains of his days on tour. “I do everything I can to promote every show in every town I go to. My time is very limited. I’m very busy - the first single has just been very busy and very taxing.”

Yamin says although his most recent hemoglobin A1c was 8, he has plans to get his diabetes in tighter control, he advocates a healthy lifestyle and he knows his results would be more favorable if he were not traveling from city to city, riding the tour bus and airplanes constantly.

Diabetes Blues

Even celebrities surrounded by constant fan attention, wealth, and almost nonstop social and stage appearances can find themselves getting down about their diabetes - and Yamin is no exception. He has certainly handled a great deal if adversity in his life, including a 90 percent hearing loss in his right ear - but sometimes depression over his diabetes still gets to him.

“I’ve been down and out before. I’ve had the diabetes blues,” he says. “You know, I think it happens to the best of us.”

Yamin says when he feels down, it’s important to consider all things - not just the challenges of having to deal with diabetes. He tries to count his blessings and realize how things could be worse.

“I just try to realize how lucky I am,” he says. “I try to take a step back and reflect on all the blessings that I have, especially over the past couple of years with living out my dream and being a sort of Cinderella story - it really helped change my perspective on how I cope with diabetes.”

He often takes advantage of his newfound stardom to help others who may be feeling blue.

“It’s important to me to inspire others and advocate to help find a cure,” says Yamin. “Hey, diabetes sucks, man. But don’t let diabetes control you. It’s very important to test your blood glucose as often as possible. Also, let people around you help you and never lose sight of your goal - no matter what kind of disease or adversity you face.”

Yamin encourages others to join in the fight as well: “Take initiative to help find a cure, and the better off we will all be in the long run.”

Nobody But You

Yamin learned as a teen that he was the only one who could best take care of his diabetes. His body would tell him if he was testing and controlling his blood glucose well enough. There were many times he woke up in the emergency room at the hospital. It was watching his mother, his own idol, cry when he woke there once that sparked him to take better control of his diabetes.

“Now I know that sometimes you just have to face the music, no pun intended. You have to take care of yourself because in the long run it’s only you that can do that. No one else can nurse your health the way that you can.”

Yamin’s Advice To Diabetes Health Readers

Overall, Yamin says his diabetes has been a sort of blessing in disguise.

“I think it has really made me stronger,” he says. “It doesn’t affect how I sing or how I perform. I carry a card in my wallet that says I’m type 1 and insulin-dependent.”

Yamin says his diabetes is a strong part of what makes him who he is and it shows up in his writing, such as in songs about how nothing is impossible, where he encourages listeners to achieve their goals. Yamin is just as passionate about finding a cure for diabetes as he is about singing. He is now sponsored by Eli Lilly and he has also done a great deal of work for the Juvenile Diabetes Research Foundation.

“Young people should just continue going for their dreams,” he says. “Don’t let diabetes stop you. I go out there and sing hard and give it my all, and am passionate and try to convey that passion on stage. It’s my job. It’s what I’m supposed to do - and it’s the best job in the world. I really come alive on that stage. I love it - it’s where I belong.”


Elliott and Me
By Miriam E. Tucker

This photo of Elliott Yamin and me was taken on May 17, 2007 in the parking lot of the Birchmere music venue in Alexandria Va, after the opening kick-off show of his first U.S. tour. He was soulful and superb…and so was his band!

When I first saw Elliott compete on American Idol, I thought he was adorable and obviously a talented singer. When I found out he had type 1 diabetes just like me, I picked up the phone and started voting! He ended up in third place, but that’s okay. Since then, he has proven himself a winner in so many ways.

Watching Elliott perform in person, I was struck by how happy he seemed to be, loving what he’s doing and clearly grateful for the opportunity. He smiles while he sings, and you smile back. He opens up and invites you in. His concert felt like a big group hug.

Afterwards, I was among 50 or so people who hung around, hoping to say hi and maybe get a quick pic. I was thrilled when, after the crowd had cleared a bit, Elliott and I actually ended up chatting for several minutes about living with diabetes!

Calm and Attentive

He seems to be very calm about his diabetes, yet not in a blasé kind of way. He obviously works at controlling it - by wearing an insulin pump - but doesn’t let it control him. He clearly doesn’t see himself as a victim. I doubt you’ll hear him complaining about the injustice of the disease. I got the impression that he views diabetes as just another of life’s challenges to overcome, along with his partial deafness, his parents’ divorce and the scathing comments of surly Idol judge Simon Cowell.

I think Elliott Yamin is an ideal example for kids who are dealing with all the emotional and physical hassles of living with diabetes. When I was diagnosed back in 1973, Mary Tyler Moore was my only role model. She was great, but of another generation. Elliott is young, like many of his fans. A kid with diabetes can look to him and relate.

But Elliott’s mature style appeals to us older folks, too. In fact, while waiting out back after his show, I met a couple in their early 50’s who were also hoping to meet him. (The husband, a D.C. lawyer, is the one who took this photo with my cell phone.)

An Inspiration to Me

And I’m 43, a bit beyond the American Idol target audience. Yet, when I began considering insulin pump therapy later in 2007, Elliott was one of the reasons I finally decided to go for it. I mean, look how cool and successful he is. Maybe I can be like that, too! Of course, neither wearing a pump nor having diabetes guarantee coolness or success. But as Elliott Yamin is proving, they sure don’t get in the way!


An Elliot Yamin Timeline

  • July 20, 1978 - Born Efraym Elliott Yamin in Los Angeles.
  • 1989 - Moves with his family to Richmond, Va.
  • 1992 - Elliott’s parents divorce. His father returns to Los Angeles.
  • 1993 - Elliott drops out of high school in his sophomore year. He later earns a GED.
  • 1994 - Elliott is diagnosed with type 1 diabetes.
  • Late 1990s - Elliott begins discovering his vocal talents singing karaoke, and performing in a jazz band and amateur performances.
  • 1995 through 2005 - Elliott works at more than 40 odd jobs, including shoe store clerk, radio DJ, bill collector and truck scale adjuster. He is working at a pharmacy bagging prescriptions when friends urge him to try out for the fifth season of American Idol. He auditions with 19,000 other Idol wannabes in Boston and is sent through. (His audition tape is not shown in the build-up to the actual competition.)
  • January 17, 2006 - The fifth season of American Idol debuts Fox Network.
  • May 17, 2006 - In what producers said was an incredibly close vote, Elliott is bumped off American Idol, taking a final third-place position.
  • Rest of 2006 - Appearances on the Tonight Show, Live with Regis and Kelly, and Dayside; nationwide tour with American Idols LIVE! Tour 2006; signs music publishing contract with Sony/ATV Music Publishing.
  • January 25, 2007 - Signs record deal with Hickory Records.
  • March 13, 2007 - Releases first radio single, “Wait for You, ” from his soon-to-be-debuted “Movin’ On” album.
  • March 20, 2007 - Releases “Movin’ On” and appears on Live With Regis and Kelly, The Ellen Degeneres Show, Rachel Ray, Jimmy Kimmel Live and TRL to promote it. The album debuts at number three on the Billboard 200 chart, selling 96,000 copies in its first week.
  • May 17, 2007 - Starts national tour in Alexandria, Va., that ends in Anaheim, Calif., on June 21.
  • July 4, 2007 - Performs in Washington, D.C., at “A Capitol Fourth” on PBS, the nation’s biggest 4th of July celebration.
  • August/September 2007 - Appears on “The Bold and the Beautiful” soap opera; appears on the TV drama “Lincoln Heights” singing “Wait for You.” Visits Capitol Hill as International Celebrity Advocate Co-chair of the Promise to Remember Me Campaign to petition congressmen to extend federal funding for type 1 diabetes research.
  • October/November 2007 - Kicks off second national tour in Chicago that ends Washington, D.C.
  • November 14, 2007 - Performs “Promise to Remember Me” in the United Nations’ Rose Garden in New York City on World Diabetes Day. Diabetes Health TV captures him performing his hit, “Movin’ On,” that day.

Ends 2007 ranked at number three on the Top Independent Albums chart and at number 114 on The Billboard 200 chart. “Wait for You” ends up ranking at number 11 on the Pop 100 Airplay chart and at number 41 on the Billboard Hot 100 Songs chart.

Story from: Diabetes Health

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“I Don’t Care About My Health Right Now”

October 19th, 2008

It is always interesting trying to observe something that we don’t ourselves live with. Though I do not have diabetes, I am surrounded by it through family, friends and work on a daily basis.

This is a blessing in disguise, both for the education I receive on living a healthy lifestyle to ensure that I don’t develop the disease (which is prevalent on both sides of my family) and for helping me assist the one person closest to me in this world - my dad.

When I returned home to Australia in November - kind of an annual pilgrimage for me - I found myself once again at my dad’s house keenly observing his type 2 diabetes management (he was diagnosed in 1997), which, as I understand, is downright poor. My dad is my role model, mentor, father and best friend. So I decided to bring him a new Bayer Contour meter after learning he had not checked his blood sugar in more than six months! It was a gift that he assured me he would use if I brought it with strips - which I did.

One day my dad had just come home from work and we were preparing a big Aussie BBQ. It had been a long, hot day - my toddler brothers were bouncing off the wall and everyone was getting hungry. The stress level was high. Dad had begun to become more and more uptight, and after he commented that his blood sugar was low I asked him how he knew it was low if he never tested?

Have you ever tried challenging a person with diabetes at a high-stress time? Now I’m sure we all know someone who feels the need to justify his lack of pro-activity in managing his diabetes. But it was the next thing Dad said that motivated me to write this: “I don’t care about my health right now.”

A feeling of defeat shot through me, although I knew this was ultimately not my fight or responsibility. All I could do was continue to encourage change. Pictures of his beloved mother, who passed away at 65 from a stroke due to poor diabetes control, suddenly flashed through my mind. I asked myself, “Is this when he will begin to care, after it’s too late?”

Feeling Frustrated

Having someone so close to me visibly affected by diabetes made it frustrating for me to be around him. I felt like a nagging son. I was really hoping that he would receive a message coming from me better than coming from his doctor. As my visit stretched on, we got into constant discussions about testing blood sugar, eating better, not smoking, and of course, exercise! In the end, though, I believe my whole trip went by without him taking even one BG test - something I continue to work on from abroad encouraging him to do.

Although my visit went by without much visible progress, both of us did experience a definite feeling of achievement. My dad agreed that he needed to make some lifestyle changes and even went in numerous times for lab work to check on his cholesterol, glucose and other indicators. In the end, I did begin to see a small shift in his attitude, from that of a man who says, “I just take my pill everyday,” to that of somebody who saw that he could control his diabetes rather than have it control him.

I could go on about the ups and downs of diabetes management I witnessed, but my goal was to support someone I love dearly so that he could live a healthy and prosperous life. As I told my dad that day, “You may not care about your health, but I do.” He is a brilliant man of whom I am so proud, and I just want him to know that he has my unconditional support, always.

Story from: Diabetes Health

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Gertrude ‘Blondie’ Fram, Age 93: Living With Type 2 Diabetes For More Than Forty Years

October 18th, 2008

From the book “50 Secrets of the Longest Living People With Diabetes”© 2007, by Sheri R. Colberg and Steven V. Edelman. Published in November 2007. Appears by permission of the publisher, Perseus Books, an imprint of Da Capo Press. Contact Dr. Colberg at www.shericolberg.com and Dr. Edelman at www.tcoyd.org.

Blondie Fram has been living well with type 2 diabetes for at least four decades, and probably many more before she was diagnosed. She attributes her long life with diabetes first and foremost to solid family ties. “I have had wonderful support from my children and their spouses,” she says.

Her success also comes in large part from the great medical support that she has received from her son-in-law, Dr. Aaron I. Vinik. Dr. Vinik is a world-renowned diabetologist and neuropathy specialist at the Strelitz Diabetes Institutes in Norfolk, Virginia. “My son-in-law has looked after me carefully,” she says. “I know I could phone him in the middle of the night with any problem, but I try not to take advantage.” After she had controlled her diabetes for many years with diet and exercise alone, Dr. Vinik was instrumental in getting her on insulin, which she now takes four times a day.

Ever since she was widowed in her late fifties, Blondie has lived with one of her children and his or her family. When the entire clan emigrated from South Africa to the United States, they brought her along with them. She currently spends six months of every year with one daughter’s family in Nashville, Tennessee, and the remainder of the year with her other daughter in Norfolk. She has enjoyed being in the heart of her family all that time, especially because she has been able to help raise her grandchildren. “I think I’ve been really lucky to be surrounded by younger people all these years,” she says.

Blondie has always been a very active person, and even now she refuses to let life slow her down too much. She was a musician in her younger years, and she still tries to get out to concerts. In South Africa, she played golf and tennis for years (even though ignorant practitioners there told her that that exercise isn’t good for people with diabetes). Until a fall that resulted in a bad fracture, she walked in a local mall two to three miles a day. She still tries to walk as much as possible because she knows how important being active is to living well - with or without diabetes.

Blondie’s active lifestyle extends to mental exercise as well. Always a reader, she belongs to a book club to this day. She never goes to bed without doing a crossword puzzle, and she also enjoys the Sudoku number puzzles. “You have to try to keep your mind going,” she says. It’s apparent that this strategy has worked remarkably well for her.

Finally, Blondie attributes her success in living well with diabetes to her positive outlook. “I always have something to look forward to. Right now I’m looking forward to seeing what colleges my great-grandkids get into!” She doesn’t let her health problems bother her (she has been treated twice for breast cancer), and she is extremely careful about what she eats (a balanced diet with no added sugar and small quantities of food). “I have just learned to live with what I have to live with,” she remarks. The fact that she can’t move around as fast anymore bothers her, but at 93 years old, she is still moving pretty fast.

Story from: Diabetes Health

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The Two Faces of Diabetes

October 17th, 2008

Article Quote: “Anyone who says you can have diabetes and lead a normal life is letting everybody off the hook and robbing [my son] Joey of a future,” says Joey’s mother, Sandra Silvestri of Calif.

The table was set for Thanksgiving and all the family was there. Joey, the baby, was the center of attention. This would be the second Thanksgiving he had witnessed in his relatively short life. Somebody remarked that he looked thin, but Sandra, Joey’s mother, thought that it was just a sign of growth. As the turkey and mashed potatoes were served, the family turned its attention away from the cooing baby to ladling piles of food onto plates. Joey didn’t eat much that night, but kept asking for more to drink.

Joey’s health got worse over the following days-he was vomiting and looked pale. On the following Monday he slept in late. Sandra didn’t want to wake him. When she entered Joey’s room late in the morning, she found her son in a state of shock. He was almost blue, his lips drawn back in a grimace, his breath shallow. She rushed him to the hospital where it took about half an hour for the nurses to figure out that Joey had diabetes and was suffering from hyperglycemia. Joey was lucky enough to recover, but not before his and his parents’ lives were changed forever.

“It was like a new baby was born,” Sandra Silvestri says. “I had a new baby, a baby with diabetes.

The Silvestri’s story is not unusual. Sandra did what every other terrified mother of a child with diabetes does-she panicked and tried to consume every piece of information available about diabetes. Unfortunately, the more she read, the more terrified she became. She found all the information overwhelming. “I put my head down and tried to survive,” she says. With every new complication discovered, she became angrier, until she was mad at the entire diabetes community, resentful of anything related to diabetes.

Silvestri’s anger lasted until she learned to channel it into something productive. She is now using her knowledge to produce a television documentary about diabetes called “Time Bomb.” The documentary focuses on the sobering complications of diabetes and the need for a cure.

When she speaks about the documentary, a hint of anger swells in her voice. She thinks the media spends too much effort attempting to make people with diabetes appear “normal.” According to Silvestri, the only way the public will take the disease seriously is by showing its debilitating complications.

“Anyone who says you can have diabetes and lead a normal life is letting everybody off the hook and robbing Joey of a future. The technology we have now is not good enough. I don’t want Joey to live a life with diabetes; I want to find a cure. Diabetes only takes from people’s lives and I hate it,” Silvestri says.

To show how serious diabetes can be, Silvestri joined Pam Fernandes to speak in front of members of congress at a Diabetes Summit in May of ‘96. The Summit drew members from all walks of the diabetes community to speak in front of congressmen and women, legislative aides, community leaders and the media. Fernandes was diagnosed with diabetes when she was four years old. She was declared legally blind at 21. She has now had 30 operations, with a kidney transplant in 1987. She was chosen to represent the 16 million people with diabetes to show the physical toll diabetes can inflict on a body.

Fernandes told the audience that unlike other people with disabilities, she was born healthy and in a matter of 20 years, diabetes changed her life. She says it’s difficult to have to continue making adjustments to her life-to lose her sight, to become infertile. Losing these capabilities has made Fernandes question what she still can do, and the answers she has received from the public have fueled her advocacy campaign.

“People tell me I shouldn’t have to work, that I should stay home and rest. They want to cut my steak for me. The public has low expectations for people with any kind of disability. We all must raise our expectations of what can be done and we have to stretch to reach those expectations,” says Fernandes.

Misdirected Solutions

Many patient advocates for diabetes believe that diabetes has become a disease too profitable to cure. Diabetes maintenance has created an industry predicted to surpass $5 billion by the year 2001. David Groves, who leads the chatline Diabetes Forum through CompuServe, and has had type I diabetes for 43 years, believes that the business community intentionally focuses on the maintenance rather than a cure for diabetes.

“Diabetes Forecast comes out and says, ‘Little Johnny has diabetes, but don’t worry, he’s going to be all right.’ It’s just not true. Little Johnny is going to die of diabetes,” says Groves.

Diabetes Health board member Joan Hoover shares Grove’s cynicism, though her anger over time has mellowed. When her daughter was diagnosed with diabetes 30 years ago, Hoover began a fund-raising campaign to find a cure. She found her greatest success when she went to Las Vegas and convinced Wayne Newton to donate the proceeds from five of his shows towards diabetes research. The benefits raised $500,000.

But after years of fund-raising, Hoover has become frustrated. Every year scientists would say that a cure for diabetes could be found with more money. But Hoover never knew where the money went after she handed it over. A cure has yet to be found, and Hoover doesn’t know if scientists are any closer to finding a cure than they were when she began. Yet articles about people with diabetes continue to emphasize the success stories without showing the darker complications of the disease.

“People always complain to me that they can’t possibly match the lives of those shown in Diabetes Forecast,” says Hoover. “The reality is that many people’s lives are much tougher, and those people aren’t highlighted by the media.”

In the past the ADA and Forecast have been somewhat hesitant to portray the darker side of diabetes, concedes Jerry Franz, vice president of communications for the ADA. But that has changed, Franz says, and the ADA’s policy has shifted to one of exposing the seriousness of the disease.

But there are other problems. Hoover and Groves point to the historic DCCT study as a prime example of how funding for diabetes research has been misappropriated. The study was the largest in diabetes history, taking ten years and using $250 to $300 million. Instead of finding a cure, “tight control of blood sugars” was the DCCT’s answer to diabetes. Groves calls the study a deliberate exercise to avoid spending money on research for a cure.

Yachmiel Altman, a software designer for Information Builders in New York, says that when the DCCT results came out, he and the people he knew with diabetes considered it a joke. “We thought it was hysterical. They spent $250 million to say that people had to control their blood sugars? I had been doing that since I was six years old,” says Altman.

How Do I Present Myself to the Watching World?

Gary Kleiman, executive director of medical development for the Diabetes Research Institute at the University of Miami, divides the ways people cope with diabetes into two categories: those who look at their lives positively, but shield themselves from the grim implications of diabetes, and those who view their lives negatively, but perhaps more honestly.

“I think most people would rather keep their heads in the sand,” says Kleiman, who has lived with diabetes for 36 years. “Who wouldn’t? What person, with or without diabetes, is ready to contemplate their own death? It’s too heavy. People would rather look at the bright side and work to make their lives as productive as they can.”

Kleiman says that once people have learned to accept the fact that they have diabetes, the natural reaction is to resign themselves and make the best of it. They don’t want to deal with feeling different. People with diabetes often overcompensate to make sure that they are just as good as anybody else.

“A person with diabetes, like anybody else, wants to promote his or her positive qualities. If diabetes is considered a defect then a person with diabetes will naturally downplay that defect,” says Kleiman.

Unfortunately, until a cure is found, diabetes will remain a part of a person’s life. Whether people choose to wallow in their own misery or ignore the problem entirely, diabetes does not go away. Diabetes Health board member William Polonsky, PhD, CDE, makes the point that a person can complain all his life about diabetes without making the disease any easier to live with.

“Diabetes is like an unwanted guest who won’t move out. You can complain to every person you know about what a crummy roommate you have, or you can do something about it,” says Polonsky. “You can get perspective, you can find humor, and you can find an adequate way of compromising.”

Groves looks at this “make the best of it” approach as a waste of time. He says that anyone who makes any claims that diabetes changed his life for the better, or even anyone who claims to have led a normal life with diabetes, is fooling himself.

“I’ve climbed the Great Wall of China. I’ve seen priceless Faberg_ eggs in Russia. I’ve done a lot of things in my life no one even dreams about, but I could have done them a hell of a lot better without diabetes,” says Groves.

Exemplar or Victim?

Fundraising groups must walk a fine line when presenting the diabetes community to the public. As Hoover says, she can go to a company such as General Motors and describe diabetes as a terrible disease with ghastly complications, and ask for money to find a cure. Then she may go back the next day to General Motors and present the person with diabetes as dependable as well as productive, and ask General Motors to give the person with diabetes a job.

According to Hoover, the only mistake a person can make is to attempt a common voice for the diabetes community. No single image of the diabetic exists. The only way to view the community is person by person.

“Diabetes is a democratic disease. For every one of the 16 million, you’ll find another image, another story,” says Hoover.
Tell Me a Happy Story

Silvestri and Hoover sit together in the pressroom, taking a break from a long morning at the 56th Annual Scientific Sessions in San Francisco. The lights are bright, the ceiling high, suggesting endless possibility. While the convention roars on outside the door with all the razz and glitter of a carnival, the women speak to each other quietly.

“Can you imagine what would happen to all those people out there if somebody suddenly found a cure for diabetes?” Hoover asks with a sly smile. “They would all be out of business.”

The women have something in common. Both are fighting for their children against a disease they don’t have. Silvestri has been at it for four years now while Hoover has been campaigning for 30. Silvestri’s son, Joey, is now six-years-old, a healthy kid in every way except that he has diabetes. Silvestri is not fighting to end Joey’s six shots of insulin a day. She is fighting against the ghost of “what could be”: the blindness, the amputations, and the kidney disease her son might have to face.

“This is not my disease,” says Silvestri. “These are not my issues. But somebody has to be brave.”

When Hoover talks about her daughter’s case, she does not refer to “what could be.” She acknowledges what she has seen-the complications touching her own life. When she recites the list of her daughter’s complications, the 20 surgeries, the two kidney transplants and the blindness, the angry blood subsides from Silvestri’s face. The edge in her voice catches and quiets to a whisper, until all that is left are tears.

Hoover holds Silvestri’s hand. She wonders, as she’s wondered before, if she has spoken too freely about her daughter. Her daughter’s story, with its long list of complications, does not happen to everyone. Though she wants to speak honestly about diabetes, she worries about presenting a laundry list of possible things which may go wrong.

Hoover now has a granddaughter who has had diabetes for three years and a daughter who has had it for 30. Hoover has begun the cycle for the second time. She says that people think because she has raised a daughter with diabetes, she can tell them how to make life easier.

“They want to hear a success story,” she says, “but it’s a story I’m not sure how to tell.”

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