Thursday, February 16, 2017

Type 1 Diabetes, Bone Density

Long Term Type 1, Bone Health Protection
The Joslin Medalist Study has examined more than 1000 people with 50 or more years of Type 1 diabetes. The purpose of the study is to find what makes the medalists different from so many other type 1 individuals who have had diabetes related complications. The study began in 2005, and is ongoing. I participated in the study in 2009. In 2011, I attended a medalist meeting at the Joslin Medical Center. Dr King, head of the project, announced that a large group of the participants in the study have some kind of "inner protection" that has prevented them from having any serious complications with their eyes, kidneys, and nervous systems. He also said that the inner protection does not protect our hearts, and that we should do our best to have good heart health. Many medalists have had heart by-passes. I have been type 1 for 71 years, and except for some very minor nerve damage, including neuropathy , I do not have any of these complications. My heart is also in good shape.
A study of a subgroup of these participants was done at the Bone Density Center of the Mass General Hospital. It was determined that the long term diabetics examined have a protective factor preventing bone health deterioration. The following abstract shows the details of the subgroup study:
Protection from Fracture Risk in Long Term Type 1 Diabetes: 50- Year Medalist Study
HILLARY KEENAN, SARA TUREK, STEPHANIE HASTINGS, GEORGE KING, Boston, MA.
Abstract:
Individuals with type 1 diabetes (T1D) have demonstrated a 12-fold increased risk of fragility fractures over their age-matched peers. As hospitalization for fracture is highly associated with decreased quality of life, morbidity and mortality this is an important, yet little studied diabetic complication particularly amongst those with extreme duration T1D. The 50-Year Medalist Study has extensively characterized over 800 individuals with a mean age of 69 y and duration of 55 y of T1D. Early examination of self-reported rates of hip, vertebral, and wrist fractures show extraordinarily low rates (0.33%, 0%, and 1.7%, respectively) in stark contrast to the 12-fold increase expected. To further examine these findings, 55 participants received DXA scans, 29 females, 26 males with a mean ±SD HbA1c of 7.2±0.8% and 7.0±1.2%, age 62.1±6.5 y and 66.7±6.8 y, and duration of 52.9±2.7 y and 55.8±5.1 y, respectively. BMI for this age group was low with 25.0±5.2 kg/m^2 for females and 27.3±4.4 kg/m^2 for males. T-scores, indicative of risk for fracture, for female 1/3 radius (1/3R) was -1.1±1.3, lumbar spine (LS) 0.1±1.2 and for the femoral neck (FN) -1.3±0.8. For males the 1/3R, T-score was -1.1±1.3, the LS was -0.1±1.9, and at the FN -1.3±0.8, none in the osteoporotic range. Total vitamin D, D2, D3 and calcium did not correlate with T scores among female or male, except for D3 among male and the LS T-score (R=0.5, p=0.03). There was no association of T scores with HbA1c, BMI, age or duration in either gender, p>0.05. As BMIs were low in male and female, the lower than expected risk T scores are likely not due to increase weight bearing as seen in T2D patients. These pilot data demonstrate protection from fracture, and low risk in this group with long term T1DM suggestive of a protective factor preventing bone health deterioration.

Tuesday, February 14, 2017

Diabetic Cheiroarthropathy

I read about a new complication today..."diabetic cheiroarthropathy".

"Diabetic stiff hand syndrome, also known as diabetic cheiroarthropathy, is a disorder in which finger movement becomes limited as the hands become waxy and thickened."

I had carpal tunnel and ulnar nerve surgeries more than twenty years ago, but this stiff hand problem is a little different. I am having carpal tunnel trouble again, in both hands. I may need more surgery, soon.

I have seen discussions abut trigger finger problems. It is very common, and a simple surgery corrects that. I have occasional trigger finger problems. It occasionally occurs when I have very low blood sugar, but it is corrected when my blood sugar is corrected.

"A typical technique for diagnosing diabetic stiff hand syndrome is to hold your hands together, both palms touching.
If the skin and joints of each hand cannot touch each other, or if there is a gap between the fingers and palms, then you should consult your doctor."

More discussion of diabetic cheiroarthropathy appears in the link below.

http://www.diabetes.co.uk/diabetes-complications/stiff-hand-syndrome.html

Saturday, February 11, 2017

Beautiful Writing, Type 1 Blog

The following blog was written by Jess Drexler, a 22 year old type 1 diabetic, diagnosed at age 6. It is a masterpiece, such beautiful writing, I wish I could write like that. I have her Mom's permission to share it here.
"Cold hard truth. In the palm of one hand I am holding
one bottle. It is a bottle of Novolog fast-acting insulin. In the other, I am holding one 50u syringe, drawn back to the fourth marker with no breach, because I have become an expert in transporting air bubbles back into the air[a]. But, for a diabetic, it is not just about the medicine. It is the intricacy and the intimacy we develop with the illness, finding ourselves reasoning with her, or begging for her to stop. It’s in the fridge, cupboards, and cabinets, and it is the clear liquid that my life teeters on. Diabetes poses a very humbling reminder every time we get up in the morning. The one thing that can kill us is also the one thing that keeps us from dying, and I’m holding it in my hand.
I still remember the last night I spent alone, before this world of vials and syringes.. It was dark outside, so the lights inside created a little reflection on the window of my small, 28 pound, 6 year old body. The street lights were illuminating a visible shape from the shadows to the pavement. I saw the bugs dancing around the streetlights in their own crazed rhythm. They’d enter the shadows and go unseen, but then the light would sweep them up again, flying in intricate circles and bumping into each other, fighting for the light. I always wondered why those bugs wanted the light so badly, but only came out at night[b].
I didn’t know that would truly be my last moment I remember, being alone.
Now, we are always together, I am always with her; we share the same body, the same home. 17 years. That’s 204 months, 886 weeks; that’s 150,000 consecutive hours we’ve spent, body-to-body, sharing the air around us.
When people ask me how I can do it, I lie.
I don’t say that I still hate every shot as much as I hated the first one when I was 5 in a white room in the pediatric unit[c]. They would grab my arms by my wrists, and pin them above my head on the white pillows, and next my ankles, until I couldn't wiggle my way free. Then the nurse would enter, with that seem[d]ingly sinister smile, holding the syringe, she’d creep up to me. I knew I couldn't escape the fear, all I could do was try to understand it. After a couple days, I understood. I understood that arguing, fighting, and running away wasn’t going to set me free, I understood that kicking and screaming wasn’t going to change anything. But,when people say “I could never do that,” or “that looks like it hurts,” I tell them “well, you do what you have to do.” But this isn’t the truth, none of it is. It does hurt, the needles and the pokes and sticks don’t get more pleasant as the days go by.
But you begin to understand, you begin to see what it is truly like, to not have a choice.
So, when people ask me about my diabetes, without having a clue about it, I lie. Because maybe, the truth isn’t what they want to hear.
Maybe it is because I can’t say it’s inconvenient having to make sure I have my phone and keys, wallet, monitor, test strips, short-acting insulin, long-acting insulin, syringes, lancets, and glucose tablets every time I leave to go somewhere.
I can’t say I almost died last weekend because I ran out of glucose tabs at my apartment[e].
I can’t say how shitty it is that I have to make the walk into bleach-greased bathroom stall and put one leg up onto the toilet to give an injection because I’m embarrassed to do it where people can see, where people can stare.
I don’t tell what it is like to have a needle fall out of your pocket in a gas station, and hit the floor like steel on a mirror[f]. I don’t tell them about getting pulled over, searched, and detained, for a needle, my lifeline, sitting on the passenger seat.
When people ask me how diabetes impacts me, I lie.
20,000 injections, 31,000 finger pokes, millions in medical bills, and a slew of misconceptions, and she shows no sign of stopping[g]. She doesn’t stop reminding me that she has control, that she watches my every move, my every moment, she is there, waiting for a mistake so she can slip inside[h]. She reminds me that I have to understand her better. She tells me I have to test more, I have to change my basal rates, or change my ratios, I have to study her and study myself, and never forget that I’m not alone. She keeps me up at night, aching for a drop of blood, or a half-filled syringe. Everyday, every hour, every second, since that night the bugs were dancing in the street lights, she is with me.
I have diabetes[i].
This is the truth[j].
Jess Drexler"

Wednesday, February 8, 2017

Joslin Medalist Study

The Joslin Medalists are people who have completed 50 years with type 1 diabetes, and who have been awarded a medal for that accomplishment. There are more than 5000 individuals who have this medal. The picture below shows medalists who attended a meeting in Boston in 2011. I am the taller fellow in the center of the back row. There are also 75 and 80 year medals. If you know any long term type 1 diabetics, and they do not have the medal, be sure to tell them to apply.
The Joslin Medalist Study in Boston examined 1000 medalists during the period 2005-2015. It was funded by JDRF, NIH, and private donations. I participated in 2009. The examination was very thorough, and my past history was required, in detail. Many tests were performed while I was at the Joslin Center.
Many very interesting things were found during the study, including the fact that many of us still produce some of our own insulin. Dr. George L. King is the head of the Joslin Medalist Study in Boston. His area of expertise involves researching the causes of, and preventions for, diabetes complications. Here is an article, about three years old, about the research. The quotes are Dr. King's own words.
"The major fears of the diabetic patient are blindness, renal failure, or hypoglycemia—all of which are complications of type one diabetes. Focus groups have shown that, if not for the complications, diabetic patients could tolerate the disease quite well." King is one of the world’s leading researchers into diabetes complications. He is Director of Research and Head of the Section on Vascular Cell Biology at Joslin, as well as a Professor of Medicine at Harvard Medical School, and he has been at both Joslin and Harvard since 1981. “My area of expertise is how insulin interacts with the blood vessels,” King says. Specifically, King is examining the effects of insulin resistance and hyperglycemia, or high blood sugar, on the molecular mechanisms that could lead to degeneration of vascular systems in the body. In 1989, Dr. King spearheaded breakthrough research postulating that activation of protein kinase C is the primary pathway in which hyperglycemia causes loss of function, and other complications, in the retina, kidney and cardiovascular systems. Following this, King showed in a series of studies using vascular cells from the retina, kidneys, and arteries specifically how hyperglycemia contributed to causing various diabetes complications.King’s research into understanding the causes of diabetes complications, so he can help to find ways of preventing them through treatments and lifestyle changes, extends far beyond the confines of a lab or a petri dish. He is working with more than 800 people in the Joslin Diabetes Medalist program —people who have been awarded medals for living with type 1 diabetes for 50, even 75 years —to uncover how they have managed to avoid many diabetic complications through the decades.“They are very interesting people,” King says about his study group. “Some of them built their own glucose meters in the 1960s and 70s, before they were widely available to the public. ”Aside from being avid do it yourselfers, King found other shared traits of those who have minimized the complications from diabetes, despite living with the condition for many years. After discounting genetic factors, King’s research so far reveals that most of the Medalists exercise regularly. They are also very careful with their diets. But, more than this, King noted another shared trait that, although fairly abstract, is very important. “They are very good advocates for themselves,” King says of his subjects. “The are always on the lookout for new treatments. They are definitely a proactive group. They’re not sitting on the sidelines waiting for something to be done for them. They’ll do it for themselves first, if they have to.” King, and other researchers, also discovered that hdl levels, the so-called “good cholesterol,” is high in Medalists without complications.“We are looking into that,” King says about the implications of the hdl levels. By examining the Medalists King hopes to uncover the specific, if not the actual molecular ways in which they are protected from complications. Is it lifestyle? Genetics? Life choices? Or, is it something else? “The hope is we look at humans who are protected, then see why they’re protected, and come up with answers about lifestyle,” King says. “Then, by looking at their tissue and biochemistry (after death) we can perhaps develop medications to simulate the biochemistry that protected them. ”On that front, King says they have discovered a way that naturally produced human insulin prevents arteriosclerosis. “Can we design an insulin to prevent arteriosclerosis?” King says. “I think this may be possible in the next five years. ”Because up to 30 percent of people with type 2 diabetes use insulin, such a breakthrough would be good news for more than just for type 1 diabetics, he points out. Meanwhile, as researchers like King work to understand the factors that protect some people from the complications caused by diabetes, and until the development, and testing of medications as a result of those findings come to market, there are things diabetics can do to help themselves avoid retinopathy, neuropathy, kidney disease and cardiovascular disease.“Don’t smoke, watch your diet, and exercise,” King advises. “Also, advocate for yourself. Be proactive. That’s the main trait of the Medalists—they stick up for themselves.”


Sunday, February 5, 2017

Wolfram Syndrome, Type 1 Diabetes

Wolfram syndrome is a rare form of type 1 diabetes. It can cause eye and hearing damage, and other complications. This article comes from the beyondtype1.org website. There are about 30,000 people in the world with this form of diabetes.

Wednesday, February 1, 2017

Type 1 Diabetes, Then and Now

A fellow Joslin Medalist recently made a post in  'The Joslin Medalist' group page. He wanted to know how we felt about the differences from when we were diagnosed so long ago compared to the present day, and how fortunate we feel that we are in the 21'st century.

I started writing a very long blog to answer his request. The blog kept getting longer, and longer. The other replies were not so long as mine, so I deleted the blog and gave the following summary.  

1945-1970...I led a normal life, with no fear, even though I took one shot each day, and tested my urine. No complications, no problem!
Ignorance of the true nature of type 1 diabetes was bliss!

1970-1990...I learned about the possible complications, and saw terribly high numbers on my first meter. I was very scared!! I did not know what to do about that. My doctors were very little help.

1995-2006...I completed my first 60 years of Type 1, and had no diabetes related complications, except for some neuropathy. That, and my joining my first online support groups, gave me confidence, and my fears were gone.

2006-2017...I am using a pump and CGM, and my A1c's are very good, in the 5.4-6.4 range for about 15 years now. Like someone else said, it is a lot more work, but it is good to know what I am doing, and seeing good results. I don't mind the extra work with the devices we have now. Good diabetes management, and no serious complications after 71 years of type 1 is wonderful!!