Letters to the Editor

Oct 1, 1998

A Better Choice of Words

In the August 1998 issue of Diabetes Health, a reader had e-mailed us requesting that we not use the term "diabetic" when referring to individuals with diabetes. We encouraged our readers to call our open line number (1-800-234-1216, ext. 130) to let us know if they preferred the term "diabetic" or "people/person(s) with diabetes." The response was magnificent, and we thank our readers for their input. Here is a sampling of how some readers felt about the issue.


My colleagues and I don't like the term "diabetics." We feel that it's interesting that people who have diabetes refer to themselves as "diabetics."

We prefer the term, "patients with diabetes."

Terri
Orensboro, Kentucky


I have been a diabetic for 36 years. In the beginning, I was told that only a person who didn't accept having diabetes wouldn't accept the term "diabetic." I'm a "diabetic," and diabetes affects all aspects of my life.

If people cannot relate to me as a "diabetic," then they're not worth knowing. I wonder how a Catholic would interpret the "ic" label, or other "ics." Are they upset?

Pat Shemer
Winona, Minnesota


I have strong feelings on this topic. I don't think people with diabetes are the only ones facing this. It's the same thing with asthmatics, paraplegics, or hemophiliacs, where we focus in on one portion of that person's life. Every person has multiple dimensions.

Being called a diabetic subverts the rest of that person's identity. It's perfectly acceptable to me for someone to say he's a "diabetic." That's his choice; he can say it whatever way he wants. I do think, however, that health care professionals and the media should get out of the habit, and use the much more respectable "people with diabetes."

Pat Barta
Lawrenceville, New Jersey


I am a medical writer, and I want to say that I support your policy of using the word "diabetics." I happen to be a "diabetic."

Anonymous
Portland, Oregon


I am a "person with diabetes."

As publisher of Diabetes Health, and somebody who is giving out information, you should discourage the use of the word "diabetic." It's extremely offensive to many people who don't have access to your publication.

I do enjoy Diabetes Health, aside from the personal views put into the articles. Overall, it's a wonderful publication.

Kathleen Wolowiec, RN
Burland, Illinois


I am a dentist with a daughter who has had diabetes for five years. I agree with Willa Ebersole, that it's much healthier to refer to people with diabetes as "people with diabetes," and not "diabetics."

Dr. Dan Freeman
San Anselmo, California


Who cares what you call them! That's the least of our worries.

I don't equate the "ic," as in "alcoholic" and "diabetic," as being a bad thing. I use both interchangeably. My CDE says that she uses "people with diabetes."

I don't think it matters. I guess that I think there are more things that "diabetics" or "people with diabetes" have to worry about than what they are called.

Nancy Vols
Phoenix, Arizona


I think a lot of folks are not in the know when it comes to the particulars, and I strongly encourage all people, including the clinicians, to refer to us as "individuals with diabetes" or "persons with diabetes," and so forth.

Lloyd Ritchie


I prefer not to call my son a "diabetic." I would prefer to say that he has diabetes. "Diabetic" is a label.

Anonymous


I am 44 years old, and I have an 18-year-old son. Both of us have type 1 diabetes.

When I was first diagnosed, I had read that calling somebody "diabetic" was an improper term in the English language, and that the proper term was "person with diabetes." I personally prefer to be called a "person with diabetes."

I enjoy your publication immensely. My son reads it as well!

Debbie Forthofer
Parkland, Florida


I found the semantics a bit silly. There is nothing to be ashamed of. I am a diabetic, and I think it is fine to refer to us as "diabetics."

Thank you for asking for our input, and I'm thrilled with your publication.

Debra Hockburg
South Hampton, Pennsylvania


Willa Ebersole thinks the "ic" label is somehow wrong or bad. It seems to me, speaking as a diabetic for almost 15 years, that it is simply a grammatical term. There's nothing necessarily wrong with it. I mean, athletes do not seem to mind being called "athletic." It's a heck of a lot easier to say "diabetic" than "person with diabetes."

Let's not get that hung up on it!

David Worthington
La Honda, California


I run the North San Diego Support Group, and my group's consensus on whether a person should be called a "person with diabetes" or a "diabetic" is that most of the people prefer to be called "diabetics." It's easier to say, and that is what they are.

It was interesting to note that people who have had diabetes the longest prefer to be called "diabetics," as opposed to the people who have just been diagnosed.

Cindy Fina
San Diego, California


I have had diabetes for 21 years, and I don't have a problem with being called a "diabetic." I believe it's easier to say than "a person with diabetes."

Beth Entwistle
San Diego, California


I'm a registered nurse and have had diabetes for the last 18 years. I find no offense in calling myself a "diabetic." It refers to an illness that I didn't choose to have, and one of which has made me stronger in character.

I don't feel like I'm being called anything other than what I am, which is a diabetic. I'm not a bad person. I'm not defective. I've learned to discipline my life, and I've learned to live one day at a time. I've learned that when I am feeling good in my health, I relish it to the utmost. That's something most people without diabetes do not do!

I hope other diabetics feel the same way.

Michelle Noorda, RN
San Diego, California


I refer to myself as a "diabetic," and I have for 34 years.

Thank you, and I enjoy your publication very much.

Trish Greer
Topeka, Kansas


I have diabetes, and wear an insulin pump. I say that I'm diabetic, but I do not say that I'm "a" diabetic. I think that's the actual clue. To be "a" diabetic means that I'm stating the condition. Of course, I'm a person with diabetes, because persons get diabetes.

Jenny Sutherland
Costa Mesa, California


I've been a diabetic for 52 years, and I've never minded being called a "diabetic."

Irene Cruty
Apalachin, New York


I far prefer the term "diabetic." It's short, sweet and to the point. Diabetes does not define me, yet I don't like the cumbersome use of something that tries to give me self-esteem when self-esteem comes from another place besides the words I use to describe a disease.

Andrea Houghton


I don't mind being called a "diabetic." Life is too short to ponder such a trivial thing. My concern is to manage my diabetes as well as possible so I can continue to live a useful and productive life.

Gary Pieper
Internet


People with diabetes are, and will be, damaged much more by diabetes than by the word "diabetic." I respect the opinion of those who are offended by the word "diabetic," and even agree with their argument. When I put up a website last fall, and started signing my name "Deanna the Diabetic," I honestly never gave it a second thought. I have had diabetes for 30 years, and the word diabetic was never an issue. We of the older generation just accept it without question, I suppose.

As pharmaceutical companies step up their efforts for a cure, we, as people with diabetes, and our loved ones should be stepping up our demand for a cure instead of bickering over a word.

Deanna the Diabetic
Moncton, New Brunswick


Editor: The following is an excerpt from The Diabetes Sports and Exercise Book (Los Angeles: Lowell House, Chicago: Contemporary Books, 1995).

Neither of the two diabetic authors of this book feel strongly about this issue, and personally use 'a diabetic' and 'a person with diabetes' interchangeably. Dr. Claudia Graham, whose sense of humor has obviously not been damaged by her 15 years as a person with diabetes, suggested that we might go whole hog and title the new edition The Pancreatically Challenged Person's Sports and Exercise Book...Apparently the number of people who are hurt, angered, or offended by the expression 'I am a diabetic' is much smaller than originally thought. A recent survey in Diabetes Forecast revealed that 77 percent of people with diabetes use the term 'a diabetic' themselves, and 14 percent don't use it, but aren't bothered by it as well.

Only 9 percent find the term offensive or demeaning.

Nevertheless, we want to reassure that 9 percent that we are trying to cut down on how often we use the term, unless the 'person with diabetes' term causes clutter, confusion, or convolution; or it diminishes the impact of a statement...Even with all those differences of opinion about terms, there's one thing we'll bet once we get the cure, and that is that even those 9 percenters who don't want to be called a 'diabetic' now will have no objection to being called 'a former diabetic' then.

June Biermann & Barbara Toohey


Readers Respond to Driver's Beating

I read the article "Hypo Hazards" in the August 1998 issue of Diabetes Health, and my heart went out to Tom Moore for the ordeal he suffered. I have experienced severe hypoglycemic reactions myself, having been a type I diabetic for 23 years, and I am fully aware that these episodes can occur virtually without warning and be devastating in nature.

There is another issue, however, that I would like to address. For nearly 40 years, my life has been dedicated to law enforcement, so I have had some experience on the other end of the baton, so to speak. I have always wanted people to understand that there is a noble purpose to law enforcement and, generally, deputy sheriffs do not leave home in the morning with the intention of participating in violent activities at work. Most are pretty average people, and putting on a badge does not make them any taller or tougher. When chasing someone, adrenaline flow tends to be excessive. When attempting to make an arrest, the deputy is allowed by law to use "sufficient force to overcome." The problem is that when people are not behaving in their right minds, they tend to feel no pain, and no amount of "reasonable" force can bring them under control. Size of the individual has no bearing on the issue. Under these conditions force escalates into an effort to gain control. I suspect, from reading the article, that this may have been what happened. I can assure you that the situation is frightening from the standpoint of the deputy when the person you are trying to control does not respond normally. You have no idea what is going to happen next, and you become concerned for your own safety, as well as the safety of those around you.

I wear my MedicAlert tag on my wrist between my watch and my hand, so that it can be seen by people who need to know. As an officer I suspect that I might not have seen it dangling from the rear view mirror if I had just run a car into a guard rail after a 30 mile chase the wrong way on a freeway, and had a recalcitrant driver trying to restart the car while giving me a ration of trouble.

Mr. Moore appears in the photo to be a nice man. My advice to him is to put this behind him, and move on with his life. I also suggest that he talk to his doctor about an insulin pump, because it has certainly made my life more predictable.

Terry Tate
Internet


I can't believe you would print that story on Tom Moore in your magazine. You want people with diabetes to live fulfilling lives, but the stories you print are very depressing. I am the mother of a diabetic child, and I find your magazine to be nothing but depressing. People with this disease need positive stories.

Katherine Ward
Internet


Reading the story about how Tom Moore was driving erratically while hypo reminds me of two similar court cases I attended in the UK.

In both of these cases I was called as an expert witness. In both cases the drivers and/or their families had noticed that they had a significant reduction in their warning signs of hypoglycemia since they had been changed to a genetically engineered human insulin. Both of them were sure that this was a significant part of the reason why the car accident had occurred.

In one case, the court accepted that the change to human insulin was the explanation for the accident. The subject had since been changed back to animal insulin, and his control was now very stable. The case was dropped!

In the other case, the court did not accept that significant blame could be put on the driver's change in treatment. He consequently had a serious custodial sentence passed against him.

There is now significant anecdotal evidence in the UK that a change to human insulin can cause a reduction in hypoglycemia awareness, and that any person experiencing this can insist on being changed back to animal insulin.

It is always essential to drive with a fast-acting carbohydrate in the car, but it must be readily available to the driver (i.e., the packet must already be opened, where the driver can easily reach it). Previous advice has been given that it should be kept in the glove box of the car, but if you become hypo too quickly, you may not be able to access the glove box!

If you are unsure, test your blood glucose before you drive. Eat regularly when you are driving, and if you feel funny or odd, stop safely and test your blood glucose. If you do not do this, please do not drive at all!

M.R. Kiln, MB, BS, DRCOG, FRSH
Rosendale Surgery
London


Insulting Caricatures

I cannot tell you how often I have had to dispute other peoples' erroneous assumptions about type 1 diabetes. There were several caricatures of fat people in your August issue of Diabetes Health. I take exception to this crude generalization. My son did not get diabetes from eating sugar or because of a poor diet. He developed the disease because his immune system attacked and destroyed his insulin-producing and glucose-monitoring beta cells. He is a thin, active child, not the fat, lazy and overindulgent type of person whom your cartoons choose to portray.

It is tremendously frustrating to see the same myths that I am constantly refuting turn up in cartoon form at Diabetes Health. While I have a sense of humor, it does not permit me to allow others to spread damaging misinformation at my son's expense.

Marina Krefft
Darien, Illinois

Editor's response: Our comics are intended to remind our readers of the lighter side of diabetes, and bring out humor.

We apologize!


C-Peptide Tests Make the Most Sense

The following letter is from Barbara Toohey, who co-authored The Diabetes Sports and Exercise Book along with June Biermann and Claudia Graham, CDE, PHD, MPH.

As always, I enjoyed your latest issue, and learned much from reading it. June and I totally agree with the need for C-peptide tests. June tried to get one for years, but doctors kept telling her that it was unnecessary. When she finally found a compliant doctor who gave her one, she learned that all these years she had been a type 1, despite the fact that she was diagnosed as a type 2 at the age of 45. We think all thin persons diagnosed in mid-life and beyond should have a C-peptide test so they will know if they are insulin takers forever, and not waste time, effort, and money chasing the impossible dream of getting off insulin.

Barbara Toohey
Van Nuys, Calif.


When I asked my doctor about this C-peptide test, she said that once a person was on insulin, the test was invalid because the body gets "lazy" and does not produce its own insulin. She went on to say that any results would be inaccurate.

Do you have any knowledge of any data that would either substantiate or refute this statement?

By the way, I look forward to each and every issue of Diabetes Health. Thank you for publishing such an informative newspaper.
Joanne Caldwell


Sorry to hear about your loss.

I hear the phone ring every time I read your paper!

My son was diagnosed at the age of 2, and he just turned 4. He is using the same dosage that he was using when he left the hospital 19 months ago, which leads us to believe that his islets are still producing some insulin. I also understand that the honeymoon phase can last longer if human insulin is taken. Our pediatric endocrinologist is very skeptical of any new research unless he can "read the data."

Please tell me how the C-peptide test is performed. How do they extract the islets, and if they find some that are functioning, what is the next step?

Thanking you in advance!

Rick Boudi
Internet


Editor's note: The C-peptide test is a simple lab test which can be ordered by your doctor. I am told that a reading above 0.7 nanograms indicates the body is still making its own insulin. This might be of value to help you and your doctor tailor your son's insulin treatment. I am not aware of any "honeymoon" advantage in taking human insulin.

Research presented in Diabetologia (1986, issue 29) showed that not all type 1s have islet destruction. Researchers studied the pancreases of type 1s after death due to diabetic ketoacidosis. Surprisingly, several were found to have no damage, and the islets looked normal and contained insulin.

If a type 1 is still making insulin (a C-peptide reading above 0.7), then he or she has some working islets. If it were possible to extract them, encourage them to divide and make insulin, we might be able to reintroduce them without using any immunosuppresants. This is only a hope for the future because the technology does not yet exist.

Dr. Alberto Hayek, featured in our August 1998 issue, has been able to get human islets to divide, but has not yet been able to get them to make insulin after they divide. More work needs to be done. Surprisingly, his NIH grant application was rejected! Hayek, like many talented diabetes researchers, is struggling to get funding to pursue this valuable line of work.

Alan Marcus, MD, responds:
C-peptide is a fragment of pro-insulin which is made by the islet cell, and split into C-peptide and insulin upon secretion into the blood.

The pancreas does not "get lazy" and stop making insulin once a person is placed on or has been taking insulin. Since no injectable insulin has C-peptide, this measurement provides an accurate way of finding out if the islet cells are still making insulin regardless of whether you are injecting it or not.

Alan Marcus, MD
South Orange County Endocrinology
Laguna Hills, California


Going For the Silver

I have been an insulin-dependent diabetic for 46 years. I was diagnosed at the age of 17 months. Thanks to your wonderful Diabetes Health ("Perseverance Pays," June 1998), I just received my certificate from Joslin Diabetes Center for being insulin dependent at least 25 years. They told me that in 2002, I will receive my silver medallion.

Thank you for sharing the news with us.

Laura Franklin
Internet


Camp For Kids With Diabetes

There is a diabetes camp in the eastern part of North Dakota called Camp Sioux, held at Turtle River State Park in Arvilla. The local ADA runs the camp, and most of the staffers, nurses, dietitians, counselors and doctors have diabetes themselves. The camp is supported by different groups and is free to campers. The child must be at least 8 years old to attend, and the camp offers two one-week sessions in the last week of July and the first week in August.

Peter, our son, has attended for two years now. His blood sugars are not worth bragging about, but the camp's philosophy is about avoiding lows.

Peter is excited to go every year. I think it must be a relief to be around others with diabetes. One year they attended a minor league baseball game, and the Coca-Cola seller descended on the group thinking he would make a big sell. The kids laughed at the expression on his face when he learned they all had diabetes.

Joyce
North Dakota


Hungry For Diabetes Knowledge

First, I would like to thank you for producing such an informative publication. I have been a diabetic for two years, and I have many unanswered questions. Your newspaper has helped me to better understand my illness, and has helped me to realize that many of the things I am encountering are not just specific to me.

I am writing because I need a better understanding of the illness and the side-effects that go along with it. My MD has been my doctor since I was a child, and I feel that she does not have all the up-to-date information on the disease.

I am 32 years old, and I have two young daughters. I need to understand how to control the diabetes, and how to understand and cope with some of its complications. If you can recommend me to a good hospital that specializes in diabetes education and control, I would be very appreciative. I live in a suburb outside of Chicago, but would be willing to travel anywhere necessary. How is the Mayo Clinic?

Thanks for your help in producing such a great newspaper!

John Hennessy
Naperville, Illinois

Editor's reply: I recently visited the International Diabetes Center in Minneapolis, (612) 993-3993, and they are great!

The whole center is geared toward education and learning. The staff is extremely friendly and knowledgeable. People fly in from all over the world to attend their one-week training sessions.

Try giving them a call.


Tel and the Trampoline

Something pretty incredible happened to Tel, my 5-year-old child with diabetes.

He was jumping on his cousin's new trampoline, and it made his blood sugar too low. We could not get him to recover for hours, so we fed him cookies, ice cream, cake, juice, crackers and candy. We checked him every 15 minutes until he recovered. The next day, we gave him the usual shot of 5 R and 2.5 NPH, and all day we could not get him above 65. He even went as low as 30. After three days of cutting back, we found he only needed 2 R and 1 NPH. His insulin needs have climbed, but he is still at 4 R and 1 NPH, and he can pretty much eat whatever he wants, including extra snacks.

My doctor says that there is no connection between blood sugar and trampoline jumping, but now Tel eats more food and takes less insulin.

I think a study should be done on type 1s and trampolines because it has improved him so much. Tel is thin and very muscular, but his weight and height are perfect.

We bought a trampoline, and are putting it in the ground.

Dori Linnell
Montana


Hypo Hazards

Dear Mr. King,

Thank you so much for the articles on hypoglycemia in Diabetes Health. I am so encouraged that the debilitating danger of hypoglycemia is finally getting coverage. Your "New Drug May Control Hypo Risks," segment on page 12 of the August 1998 issue was certainly encouraging. I hope to hear more about it.

I have had type 1 diabetes for 36 years, and have always been plagued by severe hypoglycemia. The only way I can tell if I am low is to check my BG. I have had to give up driving when I am alone, and my husband does not want me to work. I have read that low blood sugar symptoms will return if the person with diabetes can go a period of time without a severe low. So far, this has not been evidenced for me. Just the other day, when I checked my blood, it read 36. I did not believe the reading, and I felt perfectly fine. I immediately checked it again, and it showed 33, so I took my glucose tablets. I had absolutely no symptoms, and was very cognizant.

What caused this to happen? I do not have the answer, but I am thankful I did not pass out.

Pat Shermer
Winona, Minnesota


Animal Insulin Vs. Human Insulin

There is no doubt in my mind that animal insulin has a longer, smoother action. Though the evidence may be mostly anecdotal in terms of a significant difference between animal and human insulin, that is irrelevant as far as I am concerned because I know that, for me, beef-pork NPH is the basal insulin of choice. (The only "true" basal insulin, beef-pork Ultralente, was discontinued years ago, and now both of the world's major insulin producers are spending a fortune trying to create "better" basal human insulin.)

Shortly after human insulin was introduced to the world, I succumbed to the advertising and began taking it. My diabetes control had never been so erratic and, finally, after one particularly frightening episode of hypoglycemia, I changed back to beef-pork with an almost immediate return of hypoglycemic symptoms, and overall smoother control. I am a physician, as well as an endurance athlete. I monitor my blood glucose at least 8 to 10 times a day, and know my body very well. I did not imagine the problems with human insulin.

Countless other people have similar stories. I knew a pharmacist, a nurse and another physician who all had equally disturbing experiences. The pharmacist resisted a switch back to animal insulin for the longest time, feeling that human insulin simply had to be better. When she finally did make the change, she was incredulous of the improved control and decrease in frequency of severe hypoglycemia.

The ability to synthesize human insulin was an incredible medical achievement, and one that would have great medical and economic benefits for the global diabetes community. Regrettably, the product is not only much more expensive but, more importantly, it falls short of being a suitable replacement for animal-derived basal insulin.

The fast-acting Lispro is quite a different story, and I personally find it to be an extremely useful insulin. It is not a human insulin, but it is a significant improvement on regular human insulin. In the meantime, the equally imperfect intermediate and long-acting insulins are to become the only available basal insulins.

I cannot think of another single episode in the history of medicine where a life-sustaining drug was cursorily withdrawn and its substitute provided by the drug companies was more expensive, less user-friendly, and, for 99 percent of the patient population, offered no medical advantages whatsoever.

Diabetes, as anyone who is reading this magazine will know, is an incredibly complex and difficult condition to manage. The disappearance of animal insulin removes one very important therapeutic option for a number of patients. As a person and physician with diabetes, I am simply outraged that this should be allowed to happen.

Andrew Farquhar, MD
Mission View Medical Center
Kelowna, British Columbia

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Oct 1, 1998

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