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In the past 5 years, have you participated in a T1D research study that tested out a potential new device, drug, process, or other intervention?
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T1D for 69 years… but rejected because 90 years OLD !!
Ahh Sweet Charlie, good for you. Iām sure you have been through a lot but congratulations for hanging in there and everything that takes!!
Youāre amazing!
Keep up the good work! You are awesome!
Well done on reaching such a good age whilst having T1D, sweet charlie.
I would add, however, that it’s not just people of advanced years that get turned down/rejected. I very well recall asking my consultant about a pancreas transplant and was turned down as being “too old” at the age of 23. lol. Apparently, Israel had had success with pancreas transplants in the early 1980s, and it ‘sparked’ something in me to want to ‘give it a go’. (I was selected for Islet Cell Transplantation, too, but on attending the hospital that it was being performed at was ‘deselected’ as I’d already developed diabetes-related complications and, as it was still an experimental procedure, they needed to show how effective it could prove to be.)
Sweet Charlie we are seeing technology catch up. I am Type 1 diabetic for 62 years age 75. Keep going strong š
Not in the last five years.
I keep my eyes on clinical trials and hope to participate in a phase 2 next year for a new drug that sounds very hopeful.
Participated in a study recently that was trying out different adhesives for the Dexcom G7. Was very fun and interesting to be a part of it! I am very excited for the new and improved version of the device.
I was in that study as well! Great problem to solve. Adhesives have to be sticky enough without triggering an allergic reaction.
I tried to do an Islet injection trial but my blood is O+…they only wanted type A and B…didn’t explain why only those blood types qualify.
I thought about a Alzheimer’s drug study but decided against participating. Figured I tortured my body enough over these past 50 years as a type 1!
I am in the Joslin Diabetes 50 Year Medalist Study and have been since the early 2000s. They have learned a lot why some of us are able to survive so long with or without complications. We have a few who have passed 75 years with diabetes. I go to Boston periodically for them to take blood and all for their research. Once I die they will take parts for more research before returning the body for cremation or burial.
I’m also a participant in the Medalist study and have consented to postmortem donation. Forty years ago when I first attempted to donate my body for medical study/education at the local level, University of Wisconsin School of Medicine and Pubic Health, there was no interest. Joslin appears to be the only one with a T1 longevity study.
I’ve been diabetic for over 50 years and I’ve never been involved in a research study. One reason may be that I’m an American living in France, but that doesn’t explain much, since studies occur in France, too. I wish I could have contributed and remain available if I’m compatible with a study’s criteria.
I attempted to sign up for a few. But, once I turned 65 years old, it seems that I am excluded from many studies.
I have applied for many trials but have never been accepted into one.
Sweet Charlie, perhaps they could do a study on how a T1D 90 year old can inspire T1Dās of all ages to do our best and live well. You are the carrot;)
I think @ 68 I hit the ceiling for age in studies, they all seem to be for younger T1D’s? š
I agree. AS a 68 year old woman myself, I get screened out of most of the surveys as well.
That really depends on what YOU mean by “T1D research study”!
I was the first person in the area that I live to ‘Trial’ the Medtronic/MiniMed 640G insulin pump, and dependent on how well it appeared to work, it determined whether more people would be allowed to use it.
I have completed several clinical trials for T1D meds, but they were all more than 5-years ago.
I am currently participating in a study of an app that tracks carbs and insulin (I must enter that data) and makes recommendations based on a plan I have completed regarding amount of bolus to take at meals or when BS is too high. DreaMed Diary is the name I believe.
I am a Joslin 50yr medalist I go every three years for the study. Iāve added a new test every year Iām not sure how all this information is processed and if it does lead to new medications or treatments
Me too.
Iām 75 and have been diabetic for 35 years ā 30 on insulin after my endocrinologist realized this wasnāt Type 2. Iām two old apparently for any studies, but arenāt they curious how I got to be too old? My T1D brother, my role model, died at 67, and he was 4.5 years older than I am.
I usually get to test new meters.
T1 58 yrs, Pumping 24 Yrs. Been on Dexcom since 2009, now on G6 with Tandem CIQ and getting Best Numbers since 1963
Sweet Charlie you are inspiration to us all! Good to know long life can be had by TD1s.
I look for studies to participate in but I haven’t matched any yet, at least in the studies that are in my location. For instance, I get matched based on age , gender and such but I don’t have the medical problems that the study is intended for. Example: macular degeneration or kidney problems.
I have attempted but turn 73 this week and am usually outside the range of ages for the trial.
Iāve tried, but for some reason I never qualified.
I signed up for the Dexcom adhesive study but have not received any follow up.
I would be willing but they all seem to think I’m too old
I seem to have aged out of the upper limits for many studies. (Often that’s 64 or 65.)
Not in the past 5 years, but I previously participated in an early closed loop study and have participated in multiple blood draw studies.
Had a bad experience at one time when I had volunteered to provide myself as a subject in a research study, and found myself being treated poorly (like, I, by being there at their request, was a burden on the staff). They treated the patients poorly, did not communicate, and made the experience miserable. After I removed myself, and explained the experience to the research head, I was asked if they could use my experience as a learning tool for the staff going forward on how to treat the volunteer patients properly and professionally – To which I agreed.) – Since then, I have not raised my hand again to assist in any research projects. Not willing to subject myself to poor treatment again, regardless of promises to the contrary.
When I was a college student, at least a couple of times a year I volunteered for research of all kinds as advertised in the classified section of the student newspaper. Sometimes there were notices on bulletin boards. Sometimes I was renumerated. One of the studies was a national study of people with diabetes complete with a control group; it had significant findings. Now Iām In the ACT study regarding dementia involving the University of Washington in Seattle and Kaiser Permanente. Every year Iām tested for memory, plus some physical measurements such as ability to rise from a sitting position to standing without using my hands. And for a week or two I keep detailed records of how much I exercise, what I eat, social activity, etc. The payoff? No funeral costs since Iām donating my brain for physical effects of dementia (often called Alzheimerās) and the rest of my body organs to medical science. Note: I have not been diagnosed with dementia…yet. If Iām one of the group that does not develop āAlzheimerāsā that will still hopefully provide valuable info. Another payoff: this yearly check on my lifestyle motivates me to exercise, follow a healthy diet, and try to avoid social isolation.
I would like to, but I can never find a study in my area. Guess I just live in the wrong place!