My response to asinine LTTE re: diabetes in today's Strib

My hackles were raised promptly this morning upon coming across an outrageous anti-stem cell research letter in the Mpls. Star Tribune.

I don't know if my response will make it into print, but I wanted to share it with my DU friends, and encourage everyone to keep stem cell research on our list of "issues."

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As the parent of a child with Type 1 diabetes, I was stunned by the ignorance and arrogance of the February 4 letter writer who, while claiming to be "compassionate," dismissed the promise of stem cell research and suggested diabetics don't have it all that bad.

He states, "diabetes is in fact quite manageable...with insulin." Well, insulin does keep diabetics alive. My child has had roughly 10,000 insulin shots since she was diagnosed at the age of four, almost nine years ago. She also has pricked her finger for blood tests at least 10,000 times and is always on-guard against potentially dangerous low or high blood sugar. Under her current treatment plan, every meal and snack requires counting carbs and injecting insulin.

Ironically, this letter appeared the day after my daughter returned from a late-night trip to the emergency room, where she was treated for complications arising from a simple cold, despite three days of home treatment that included blood tests and insulin injections every two hours.

I am in awe of my child's courage and spirit in dealing with this chronic illness. The statement, "there is nothing so urgent" about finding a cure if it involves using cells from soon-to-be discarded blastocysts contributed by fertility clinic patients, is a slap in the face to my daughter and the hundreds of thousands of American families struggling with this disease, as well as those with Parkinson's, Alzheimer's, multiple sclerosis and spinal cord injuries who could benefit from stem cell research.

Why settle for "promising treatments coming out all the time(?)," or limit research to politically-correct, but less flexible, adult stem cells? The Bush administration's obstruction of stem cell research has already delayed a possible cure by years.

Diabetic children are just as innocent as any "innocent potential life," and deserve a cure, now.

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Zookeeper

Best wishes to you and your daughter.

Every time I go to a new doctor and have to give the run down of family medical history, I am asked if my mom is overweight. No, you moron, that's Type II.

Anyone who doesn't think that living with diabetes is bad obviously doesn't know anyone with it. My mom had to have open heart surgery a few years ago. Her arteries were hardening quite badly, and they said it was from diabetes. (She had 90% blockage on one side, 75% on the other, triple bypass.) They sent her home one week after the surgery, and a few days later my stepdad was rushing her to the ER. She couldn't keep food down, and her home machine just kept saying "high". No kidding! When they checked her at the hospital, her blood sugar was over 1000. They couldn't believe she was still awake.

I also have a grandmother with Parkinson's. I think it's a damn shame that anyone would deny these people a chance to live a better life.

She must have had ketoacidosis, or at least large ketones and dehydration. How long has your mom had Type 1?

My daughter said that diabetes was discussed in her health class and the message was, "don't get fat or you might get diabetes." She said all the kids turned and looked at her like, "But, you're not fat..." So, she explained to the class the difference between Types 1 and 2. I've also had people say to me, "How can she have diabetes? She's skinny."

Type 1 diabetes is not a lifestyle disease!

They are looking at putting her on a pump now because she can't keep it under control.

My husband has type 2 diabetes which became resistant to the oral medicines. He is on insulin, too, and hates it every time he needs an injection (which is 4x/day).

Yes, diabetes is "managed" with insulin, as kidney disease is "managed" with dialysis. Neither gives a really great quality of life, as one is always dependent on medicine or machines to continue living at all. (One of these days Hubby's kidneys will give up and then he will be on dialysis as well.)

There is nothing quite so scary to a loved one to see the "patient" having a bout of really low blood sugar, and then having to call the paramedics to deal with it. Been there, done that, had to pay the bills afterwards.

The work involved with keeping your husband and my daughter healthy is no walk in the park. My elderly mom-in-law has Type 2 after living a normal American lifestyle for someone of her generation (fairly sedentary, slightly overweight). She has been very conscientious in trying to control her blood sugars, but the stress and anxiety it induces just sends her blood sugars higher. She did pass out at home alone one day. Fortunately, she now has a nurse's aide.

I know someone who has frequently had to call paramedics in the middle of the night when her husband has an insulin-reaction. One of their children was also recently diagnosed with Type 1.

Good luck to you and your hubby. :hug:

I saw the first one and almost screamed when I read the "diabetes is in fact quite manageable...with insulin." line.

I don't say this to make light of diabetes in humans, but my only experience with diabetes is with my sister-in-law's dog. He gets shots twice a day, but unlike a human doesn't get his sugar daily so at least he's spared constant sticking with needles. My sister-in-law has to guess at his sugar levels by his behavior (more water drinking, more insulin; staggering around - something sweet, quick). He has his paws checked daily for cuts because an infection will kill him and he has gone blind. Most the time he does still seem to enjoy life, but he has days when you have to wonder if it isn't time for the last trip to the vet (then he perks up again). The vet has said that eventually it will probably destroy his kidneys and explained what to look for when they begin to fail.

As the saying goes, I wouldn't wish this disease on a dog.

I can only guess that the person who thinks insulin is the answer doesn't know anyone with diabetes, not even a dog.

Your sis-in-law's pup is suffering the same consequences of uncontrolled diabetes as a human would. Long-term consequences can include blindness, kidney failure, heart disease and amputations. BTW, the need to check for sores or cuts is due to a nerve damage and lack of sensation in the feet. An "owie" that would have us running to the medicine cabinet, may not even be noticible to someone with diabetes.

Thanks for telling me you "almost screamed." I must have looked like an old WB cartoon character with steam blowing out of my ears! What I really wanted to say to that guy could have been condensed into two choice words, but I figured the Strib wouldn't print it. :evilgrin:

The original letter writer had no right to speak for those with serious illness.

When my daughter read the letter, she looked upset and said, "How does HE know?"

There were a couple of excellent responses in today's Strib. I'm so glad his outrageous letter didn't pass with comment.

on several occassions due to a reaction to insulin. Granted he's not had a severe reaction in years, but to indicate that it's "no big deal" as the idiot who wrote the orignal letter did is just plain ignorant.

Hugs to you and your wonderful child. :hug:

How old is your son now? If he is an adult, did it take you long to let go of feeling responsible for keeping him healthy?

I met a woman recently who has a 19 year old son with Type 1 and said that he never does blood tests....he just guesses with his insulin! She was pretty upset and worried about it, but there wasn't much she could do anymore.

for him LOL.

I actually took on that mother role of responsibility/guilt for a long time as well. I felt like his mother passed the proverbial batton to me. Finally I worked on NOT feeling responsible, because I realized it's his issue. I can't "mother" him nor can his mother as he's an adult and we are not with him 24/7.

He has an insullin pump now and it has helped quite a bit with the roller coaster we were on before. His sugars are much more stable and he has more freedom with what he eats and when.

Minimed (the company who makes the pump) worked with us a great deal b/c our insurance was limited. We got free supplies for one year, and by then we had new insurance.

If your interested more in the pump, call minimed, and they'll send you a free video.

Telephone:
Product Information (toll free): 1-800-MINIMED

To learn more online:

http://www.minimed.com/

There is no perfect solution, but the pump is as good as it gets right now.

On the up side. My husband is 41 and has had type 1 for almost 30 years. He's got no circulation issues, his eyes are healthy, and he's basically in great health ... aside from a large spare tire he's accumulated and a bit of high cholesterol that is. But as far as diabetic complications ... nada. And, he certainly wasn't/isn't the poster boy for healthy life choices either! But, he's taking seperate medication for his cholesterol and managing fine. ;)

Sorry, I'm not sure why I thought you were referring to your son.

I'm glad to hear that your husband is in such good health. And I'll bet both you and his mom had something to do with that. :) But, you are right about it ultimately being his responsibility. Diabetes care can quickly turn into the hot button in any power struggles...especially with teens.

Thanks for the pump info. We are working toward getting her the pump, but she has to demonstrate more responsibility with record-keeping before they will prescribe it. She took on a lot of responsibility for her own care at a young age because she wanted the freedom to go on overnights, but, during the last year she has kind of burned out and we have been trying to take back some of responsibility. She is getting back on track and I hope she will have the pump by the spring.

eligible for the pump. I know many diabetics can "feel" where they are so they don't track like they should? Also, many of the newer monitors track sugars for them so?

No problem on assuming it was my son, I should not abbreviate if I want to be clear ey? dh = devoted husband in some internet circles ;)

You might want to call minimed and get started working with them now? Minimed got my husbands insurance company to move a bit quicker and make an exception on his acceptance of the pump as his sugars were a bit out of the range they generally offer it. Sugars can't be too "good" or too "out of control" or they deem the pump "un-necessary" or say your not in good enough control to get it, respectively. :eyes: Insurance companies will try to find a way sometimes to turn you down.

Good luck with everything!

at Children's Hospital in St. Paul. I feel confident that the Endocrine team will go to bat for us if we run into any problems with insurance. But, I appreciate the suggestion to start looking into it, since our weasely out-of-the-state insurance company put up a fuss about paying for Glucagon (a life saving medication used in cases of severe insulin shock).

deaths every year!

"3.2 million deaths can be attributed to diabetes each year according to a new publication released today by the World Health Organization (WHO) and the International Diabetes Federation (IDF) to mark the launch of their joint programme "Diabetes Action Now". Updated estimates suggest that six deaths can be attributed to diabetes or related conditions somewhere in the world every minute, a figure three times higher than previous calculations.1

"Diabetes is a major threat to global public health that is rapidly getting worse and the biggest impact is on adults of working age in developing countries," said Dr Catherine Le Galès-Camus, WHO Assistant-Director General, Noncommunicable Diseases and Mental Health. "In most developing countries at least one in ten deaths in adults aged 35 to 64 is attributable to diabetes, and in some the figure is as high as one in five." Diabetes has become one of the major causes of premature illness and death in most countries, mainly through the increased risk of cardiovascular disease (CVD). Diabetes Action Now is supported by a World Diabetes Foundation grant to the International Diabetes Federation and WHO funds. The purpose of “Diabetes Action Now” is to raise awareness about diabetes and stimulate and support the adoption of effective measures for the management and prevention of the condition in low- and middle-income countries and communities".

More here:

http://www.news-medical.net/?id=1221

I didn't know the numbers were that high! I have heard that in some developing countries, diabetes care is a guessing game, without the resources for daily testing or even being able to count on insulin or syringes being available.

My eyes have only recently be opened to this terrible disease. My 12-yr-old nephew was diagnosed in October. I had no idea what these kids go through until then. Thank you for an excellent letter.

I didn't have a clue about Type 1 until my daughter was diagnosed. I remember asking the doctor whether or not she would "outgrow it." The Dr. looked at me like I had asked a really stupid question. She was diagnosed before she was really ill (most parents find out when their child is hospitalized), so it was really a shock and was difficult to believe, especially since there was no family history of Type 1.

How is your nephew doing? I've heard that it can be very difficult for kids when they are diagnosed in their pre-teeen and teen years. If there is any saving grace to developing it as a tot, it's that it's hard for them to remember living without diabetes. The downside is by the time they hit their teens, they are usually really tired of dealing with it.

My cousin was diagnosed with it when she was nine. She is now 52.

New treatments resulting from research have greatly improved the quality of life for people with diabetes in just a few decades. I agree that stem cell research offers no guarantees, but lots of promise, for more effective treatments.

It would be good to pay attention to the research taking in place in Europe, especially Germany. A lot of our clinical researchers are partnering with European partners in order to continue stem cell research.

and sometimes is also referred to as "insulin dependent diabetes." I think the "Type 1/Type 2" labels are fairly recent attempt to clarify the matter. Although Type 1 usually develops in childhood, it can develop later. And with children becoming increasingly overweight, there is an increase in Type 2 appearing in kids.

The research is happening, but I believe it would happen faster if the Bush administration wasn't obstructing it. Also, wouldn't it be a boon to our state economically if the research could happen here instead of California or Europe? I'm surprised the RW can look past the profit potential.

BTW, my letter appeared today in the Strib!!!! Woo-hoo! (My daughter looked thrilled, gave me a hug and thanked me.) :hi:

Great letter.:thumbsup:

Congrats - and I think they printed it in its entirety. VERY impressive!

I was surprised and pleased. Yes, they did print the whole letter and it was well over their 250 word limit. I submitted it as a "counterpoint" just because of its length.

It will be interesting to see if they get responses to my response....

I recognized it when I read the paper this morning. Nice Job! And I'm also impressed that they thought enough of it to waive their 250-word rule. I hope the insensitive butthead who wrote the earlier letter gets an education.

"insensitive butthead." LOL!

And, you must have impressed the Strib as much as you impressed us, given that they ran the whole letter.

Congrats!