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    • 4 hours, 57 minutes ago
      Greg Felton likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      Before the onslaught of Type 2 Diabetes, I, as a T1D, could get an appointment almost anytime I needed one. Now, I cannot get an appointment within 3 months, which is the time within I must see rhe doctor for Medicare benefits. My doctor cancelled 2 (half ) of my sppointments last year. Caused ma a lot of problems. I live in Florida, a place where modern medicine does not seem to have reached yet.
    • 4 hours, 57 minutes ago
      Greg Felton likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      I routinely see my Endo every three months. At the end of my appointment I schedule the next quarterly meeting date. But if I ever have to reschedule it, then it takes anywhere from two to four weeks to find a time that works for us.
    • 6 hours, 53 minutes ago
      Mike S likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      It all depends on the urgency of my needs. I’ve gotten in the next day before, but those days may be gone! It also depends on who I see. But these days, even the PA is often booked. Of course, cancellations happen, so that can be a factor as well.
    • 7 hours, 9 minutes ago
      Jeff Marvel likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      The beginning of the year is always a bit iffy when you're on Medicare. Even though I've already paid my annual deductible, my pharmacy can't see that, so I must wait until it shows up on my Medicare account before I order new insulin. I always try to have plenty of insulin on hand at the end of December so it's not an issue. The organization I get my pump equipment from has a lot they must do because of Medicare, as well, and that can get time consuming. All-in-all, I'm lucky to have the time, energy and patience to deal with it, and I know up front these time-consuming moments are to be expected. If I wasn't retired, it'd be more of an issue.
    • 18 hours, 20 minutes ago
      Gerald Oefelein likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I selected 6 hours. So far, I have spent 6 weeks trying to get a new pump. I decided to look for a new pump in mid-December as my 770G warranty expired on January 3. I wanted to go hoseless with the Omnipod and the Dexcom 6. I contacted Dexcom and they sent me to the medical distribution company ASPN, and they could do the Omnipod but only with pharmacy part D with the Dexcom 6 sensor on DME My part D pharmacy plan had Omnipod as tier 6. $155.56 co pay and $150/month. The omnypod is not available as DME. I called INSULET the mfgr of omnipod. They told me they only supply via pharmacy plan to get more T2d's to sign up. Verses 100% DME coverage, part D coverage that was a non-starter. I contacted another supply company CCSmed. They could do both Dexcom 6 and tslim x2. Ineeded a Endo visit to get the notes and Rx. I had my Endo visit on Jan 20. Still waiting for CVSmed. Been waiting for 5 weeks now. Just called CCSmed and they got the endo notes and Rx but Medicare wanted to know who paid for my 770G 4 years ago. Fortunately, that was private/company. My new pump should now ship tomorrow. Finally.
    • 22 hours, 8 minutes ago
      Wanacure likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      Most of the 3-4 hours is way ting on a phone
    • 22 hours, 11 minutes ago
      Wanacure likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I answered "No time," but I live in France, where we have a single provider. I receive a prescription from my doctor and go to the pharmacy monthly to have it filled. (Pump peripherals are provided by a separate supplier.) "Appeals" do not exist here since the doctor will only prescribe medicines that are reimbursed. And no, I have never needed a treatment that wasn't covered.
    • 22 hours, 53 minutes ago
      Wanacure likes your comment at
      When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
      The resources I use in managing my glucose levels once sick is my own personal experience after living with t1d for 46 years
    • 22 hours, 53 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      Switching to Medicare has created (seemingly) endless hours and day making this transition with all things diabetes related. We’re still in the midst of making this ā€˜delightful’ change. This week we learned that Medicare covers Either CGM stuff OR glucose test strips. Thank goodness that God is sovereign over all these details. He helps me walk through these challenges without despair.
    • 22 hours, 55 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      The last 3 months have been filled with frustrating phone calls now that I switched back to traditional Medicare from a Medicare Advantage plan. I have been fighting to get strips authorized in addition to CGM- they did not authorize them because I had no proof that I had a meter!! Crazy making! I had to write an appeal letter in order to get them, but finally got it worked out. I also had some pump replacement issues, trouble getting insulin, etc.
    • 23 hours ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I answered "No time," but I live in France, where we have a single provider. I receive a prescription from my doctor and go to the pharmacy monthly to have it filled. (Pump peripherals are provided by a separate supplier.) "Appeals" do not exist here since the doctor will only prescribe medicines that are reimbursed. And no, I have never needed a treatment that wasn't covered.
    • 23 hours, 1 minute ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      Much too much time! Part of it, I know, is my own fault, for not keeping anxiety at bay when I have to sort out which plan will work best, annually. But it is something I dread, every single year. When I call to get some help understanding, the people are almost always very nice, but I have had times when the information was incorrect or not explained clearly. I usually commiserate with the person on the phone for having such an annoying system, and agreement seems to rule the day. But I never chose to make sorting out insurance management a career!
    • 23 hours, 3 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I selected 6 hours. So far, I have spent 6 weeks trying to get a new pump. I decided to look for a new pump in mid-December as my 770G warranty expired on January 3. I wanted to go hoseless with the Omnipod and the Dexcom 6. I contacted Dexcom and they sent me to the medical distribution company ASPN, and they could do the Omnipod but only with pharmacy part D with the Dexcom 6 sensor on DME My part D pharmacy plan had Omnipod as tier 6. $155.56 co pay and $150/month. The omnypod is not available as DME. I called INSULET the mfgr of omnipod. They told me they only supply via pharmacy plan to get more T2d's to sign up. Verses 100% DME coverage, part D coverage that was a non-starter. I contacted another supply company CCSmed. They could do both Dexcom 6 and tslim x2. Ineeded a Endo visit to get the notes and Rx. I had my Endo visit on Jan 20. Still waiting for CVSmed. Been waiting for 5 weeks now. Just called CCSmed and they got the endo notes and Rx but Medicare wanted to know who paid for my 770G 4 years ago. Fortunately, that was private/company. My new pump should now ship tomorrow. Finally.
    • 23 hours, 3 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      The beginning of the year is always a bit iffy when you're on Medicare. Even though I've already paid my annual deductible, my pharmacy can't see that, so I must wait until it shows up on my Medicare account before I order new insulin. I always try to have plenty of insulin on hand at the end of December so it's not an issue. The organization I get my pump equipment from has a lot they must do because of Medicare, as well, and that can get time consuming. All-in-all, I'm lucky to have the time, energy and patience to deal with it, and I know up front these time-consuming moments are to be expected. If I wasn't retired, it'd be more of an issue.
    • 23 hours, 3 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I said 8+ and the reason, as for so many others, can be summed up in a phrase: transitioning to Medicare.
    • 23 hours, 39 minutes ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      I’m a reasonably satisfied MDI user with Lantus and Fiasp. I’ve looked into getting a pump but honestly, until I find one that does everything I want, I’ll probably hold off. My wish list for a pump: 1) no tubes 2) works well with Fiasp 3) controls that allow me to stay at my target of 70-90 mg/dl all night long.
    • 23 hours, 50 minutes ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      MDI for the past 60 years and do not see any alternative that I would prefer. The needles for my pens are so thin and sharp that they are painless (a far cry from the lancets I once used). chiefly, I am glad not to have to deal with setting up a pump and. Although I love my libre, I am not good candidate for having devices affixed to me. If my insulin delivery got interrupted they way i have interrupted my cgm service, I would have been in trouble. Furthermore, I have a track record of having both mechanicall and electronic things malfunction. (Seriously, I sometimes act as a beta-tester for technology folks. Maybe I push to many buttons?)
    • 1 day ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      I've had Tandem x2 and Dexcom since September. Previously on Medtronic for around 15 years. Grew to HATE the sensors and switched before the warranty on my last Medtronic was up. So far, I absolutely LOVE the Tandem and the Dexcom. I'm disappointed, however, in the amount of waste and plastic that this pair creates. Of course there will always be plastic waste from any pumps/sensors, but the amount of non-reusable stuff for insertions is ghastly.
    • 1 day ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      Have your doctor prescribe the syringes with .5 unit increments instead of the 1 unit syringes. Not quite a .1 unit which you are hoping for, but .5 is better than 1 unit increments.
    • 1 day, 1 hour ago
      Ahh Life likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I answered "No time," but I live in France, where we have a single provider. I receive a prescription from my doctor and go to the pharmacy monthly to have it filled. (Pump peripherals are provided by a separate supplier.) "Appeals" do not exist here since the doctor will only prescribe medicines that are reimbursed. And no, I have never needed a treatment that wasn't covered.
    • 1 day, 3 hours ago
      ConnieT1D62 likes your comment at
      In your own words, how would you describe the feeling of a severe low?
      Nothing short of terrifying. I often go into seizures, having no idea where I am, who anybody, or even if I’m alive or dead. I’ll feel like I’m falling or hurtling toward something. At home I feel like my house is tilting. Im leaving a lot out but these are some of the scariest things.
    • 1 day, 3 hours ago
      Modee likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      Most of Europe has the right idea! Is it a good health system for you overall? The US may be too large to implement a national system, but that doesn't hold states back (as long as there is federal money to help).
    • 1 day, 3 hours ago
      Modee likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I answered "No time," but I live in France, where we have a single provider. I receive a prescription from my doctor and go to the pharmacy monthly to have it filled. (Pump peripherals are provided by a separate supplier.) "Appeals" do not exist here since the doctor will only prescribe medicines that are reimbursed. And no, I have never needed a treatment that wasn't covered.
    • 1 day, 3 hours ago
      Modee likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I said 8+ and the reason, as for so many others, can be summed up in a phrase: transitioning to Medicare.
    • 1 day, 3 hours ago
      Modee likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      PUMP USERS: Just in case nobody has told you, if you use a pump, Insulin is considered durable medical equipment, which can save a lot of money, even with the new price cap
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    Before you or your loved one were diagnosed with T1D, how much did you know about T1D?

    Home > LC Polls > Before you or your loved one were diagnosed with T1D, how much did you know about T1D?
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    46 Comments

    1. LizB

      I was diagnosed at age 19. I vaguely knew what diabetes was and I knew that there was a kind that children got, and a kind that older people got. That’s about it. When I was diagnosed I don’t think the terms Type 1 and Type 2 were used. It was “insulin dependent” and “non-insulin dependent”.

      1 year ago Log in to Reply
      1. William Bennett

        I was dx’d in 1983, just turned 28, and the Dr had to register it as “diabetes mellitus, juvenile type,” after explaining that while “mature onset” tracked with age, “juvenile” didn’t, and there was this new “type 1/type 2” terminology on the horizon but it hadn’t been formalized yet. But the weird thing (as I said in my other post) is that the confusion hasn’t gone away, and even GPs misdiagnose patients because “you’re too old to have Type 1,” contradicting the whole point of the change in terminology.

        2
        1 year ago Log in to Reply
    2. PamK

      I checked both that I was aware of T1D and that I was too young. The reason? I was only 2 1/2 years old, but I had an uncle with it. So, I had heard talk about his health. Beyond that, I really did not know anything about the disease.

      1 year ago Log in to Reply
    3. William Bennett

      I was 27 when I started feeling sick all the time and the whole thirst/urination thing was getting impossible to ignore, but I had no idea what was going on or even that those things were related. Fortunately my MIL was an occupational therapist, and when my wife mentioned it to her she said “That sounds like diabetes, get him to a doctor NOW!” If that hadn’t happened, I wouldn’t have known until DKA. The doc said “Probably your wife wouldn’t have been able to wake you tomorrow morning.” Which I guess says ignorance isn’t a good thing, but who really pays attention to the details of this stuff until it hits home? I try to explain it when people ask me, but even that can be an uphill struggle. There’s a lot about it that’s counter-intuitive to the lay public. Even a lot of GPs for that matter. Lot of people get mis-dx’d because “you’re too old to have Type 1,” even though the whole POINT of “type 1” “type 2” designation was to do away with that erroneous age association.

      2
      1 year ago Log in to Reply
    4. Anthony Harder

      I was diagnosed with T1D when I was 7 years old, 1965. T1D was not exactly a topic for dinner table talk or part of my first grade curriculum.

      1 year ago Log in to Reply
    5. gary rind

      Knew about it but I was terribly needle phobic, thought I could NEVER give myself an injection or prick my fingers to draw blood for a meter! 18 years later, it’s not a big deal. šŸ™‚

      1 year ago Log in to Reply
    6. GLORIA MILLER

      I was seven when I was diagnosed. I had never heard of it and never knew anyone with diabetes until I was a senior in high school. I can remember returning to school after being diagnosed and a girl came up asking if I was going to die. I said no, why? She said, “Well, you have die-betes! ” I went home and asked my mother if I was going to die and she said no but I recall nothing more on the conversation.

      1 year ago Log in to Reply
      1. AnitaS

        That is so sad. She wasn’t trying to be mean, she was just uneducated. šŸ™

        1 year ago Log in to Reply
    7. Richard Descoteaux Jr

      I was diagnose with type 2 but we do know there is type 1 ,1.5 and know there coming out out with type 3c

      1 year ago Log in to Reply
    8. Louise Robinson

      My father was diagnosed with diabetes when I was 4 years old. This was in the 1950’s. I watched him test his urine for glucose and give himself a shot of U40 Protomine Zinc beef-pork insulin each morning. Dad passed away from cardiac complications of diabetes in 1974 and I was diagnosed several years later while in my late 20’s. I think watching my Dad deal with his diabetes helped me to better accept and deal with my Type 1 diagnosis. We have so much more available to us now to help us better manage our condition.

      1
      1 year ago Log in to Reply
    9. Kevin McCue

      I was 21 and no health issues that would have sparked my interest. Only thing I knew about diabetes at the time was learned in school during health and science classes

      1 year ago Log in to Reply
    10. Mary Dexter

      What still stuns me is how little health care professionals know about diabetes and how stubbornly they cling to misinformation.

      5
      1 year ago Log in to Reply
      1. Brett Jorgensen

        Yea.

        1 year ago Log in to Reply
    11. AnitaS

      I was diagnosed at 9yrs. I didn’t know anything about the disease but I did have a 20-year-old cousin who had it. I knew she gave herself shots for some reason but I don’t think I had ever asked her why she did that. After being diagnosed myself is when I learned why she gave herself shots.

      1 year ago Log in to Reply
    12. Sadie Robinson

      I was a home health nurse when I was diagnosed with diabetes

      1 year ago Log in to Reply
    13. cynthia jaworski

      I had never heard of diabetes when I was diagnosed at age 10. Had I known about it, I might not have been so certain that I was about to die before my diagnosis. I could not imagine that what my body was doing could be compatible with life for much longer. Learning that something could be done was an amazing revelation. I imagined that medicine had the condition well – in – hand, since there were shots for it, another example of my ignorance. This was in `962.

      1 year ago Log in to Reply
    14. Amanda Barras

      I was barely 4. No clue!

      1
      1 year ago Log in to Reply
    15. Natalie Daley

      My brother was a T1D at 23 and he was4.5 years older than me. T1D was my 40th birthday present, 35 years ago. He died at 67 from major complications. He was my role model. From the time he and then I were diagnosed, he was the only one who ever really understood what our lives were really like. He died almost twelve years ago, and I will always miss him.

      1
      1 year ago Log in to Reply
    16. George Lovelace

      Dxed age 15 in 1964, Dad had been LADA since 1940. All good knowledge came from my Mother, Dad was not good at controlling his DM but did survive until he as 79. I’m 73 now and just hoping to keep going another 20 years!

      1
      1 year ago Log in to Reply
    17. Mark Schweim

      I had a first cousin who was diagnosed with Type 1 when he was in Grade School, not sure if he was in his teens or younger when diagnosed. Back then, our family was close enough that we went to each other’s homes several times every year so I had watched him give himself Insulin shots.

      Mine wasn’t diagnosed until I was 24 years young, and at the time, my first three days in the Hospital and most of the week before diagnosis, I was actually adding to my bedtime prayers asking to not wake up in the morning and simply wake up dead.

      The night my Diabetes was diagnosed, the entire staff at the Hospital was repeatedly commenting that they were completely dumbfounded by my ability to even remain alive muchless fully alert and conscious. They all said my blood glucose was too high for their equipment able to read glucose levels up to 1600 to register a reading so I should have arrived unconscious by Ambulance due to my blood glucose alone.
      But they said everything they had said that a Blood Acetone level of 2.5% was documented as “100% FATAL with NO CHANCE of survival or recovery.” Yet when tested, my Blood Acetone level was nearly 3% and I remained conscious and alert while the Hospital staff was saying that my Blood Acetone level alone should have had me getting checked into the MORGUE instead of the Hospital ER!!!

      1 year ago Log in to Reply
    18. M Fedor

      At the time I was diagnosed, I was actually teaching biochemistry to 1st-year med students and I had just given a lecture on the molecular basis of diabetes. However, I had no clinical understanding of the disease and it took a diabetic colleague to diagnose me after I complained about poor vision and constant hunger. Luckily, he got me into the med school’s endo clinic the same day.

      1 year ago Log in to Reply
    19. Marcia Pulleyblank

      I knew very little about diabetes but had one first cousin who had it. I had no idea about type 2 . A few years later probably at least 10 years, I heard about elder relatives who who got it when they were old. I was treated initially as though I had type 2 with medication. I am sure I was going through the ā€œhoneymoonā€ because I was finally put on insulin about a year later.

      1 year ago Log in to Reply
    20. Janis Senungetuk

      I was 8 years old when dx in 1955. Even though my family tree lists many relatives who died from “sugar sickness” before insulin was available, personal health matters were not a topic of discussion. My maternal grandfather was dx. with diabetes as an adult. I know he used insulin, because I overheard comments during a holiday family dinner about the beef/pork source of the insulin, but it was a brief mention. During the whole month I was hospitalized with the dx. of T1D, no one provided any information to me. I was continually asked for urine samples. When I asked why, I didn’t receive an answer. The MD’s only spoke with my parents. Since I was in a ward filled with many very sick kids, some in iron lungs, I thought I was going to die. That month in the hospital, filled with unanswered questions, paved the way for a rocky start on my journey with T1D.

      1 year ago Log in to Reply
    21. Bob Durstenfeld

      I was 18 months old when Dx’d, my eldest son was 8 months old, his daughter was18 months old.

      1 year ago Log in to Reply
    22. Thomas Cline

      I had read the wonderful book about the discovery of insulin (and one of the best descriptions of scientific research complexities I have ever read) “Glory Enough for All” but I was so clueless that when I had all the classical symptoms of Type I, it never once occurred to me that I might have diabetes. In fact it was severe leg cramps (due to dehydration) that got me to the doctor, not all the other (now) obvious symptoms. Then because I was an adult, of course my primary care doctor diagnosed it as Type 2.

      1 year ago Log in to Reply
    23. Joan Fray

      My dad was a pediatrician and also T1d. I got it when I was 12. I knew you had to give yourself a shot every morning and not eat sweets ( we didn’t). But we never talked about it. Even after I got it. We just dealt with it.

      1 year ago Log in to Reply
    24. Joan Fray

      Fun reading about all of us old timers who weathered the bad old days of diabetes. Glad to have all the modern conveniences, but it’s still a pain in the old derriĆØre! And expensive!

      2
      1 year ago Log in to Reply
    25. Christina Trudo

      Like so many others I was young (11) in the earlier days (1962) and I had never heard of it.

      1 year ago Log in to Reply
    26. Lawrence Stearns

      I was diagnosed a “Juvenile” diabetic in 1977, when I was 23 years old. I had no idea what diabetes was, not a clue. I’d heard of the word “diabetes.” But, knew nothing more than the word. It probably was a good thing, because I just followed the doctor’s directions, and eased myself into it. Back then it was multiple injections, and urine test strips, which were completely useless because they told me where me glucose levels may have been hours before. My first signs of diabetes were, complete exhaustion walking up a flight of steps, and constant thirst. I was drinking water by the gallon. Felt exhausted all the time. Figure that I was diagnosed within several days to a week after onset.

      1 year ago Log in to Reply
    27. Kristine Warmecke

      For my brother, dx. at 7 month’s old in 1972, my parent’s knew little about it; when I was dx. at 11 years old – 10 years later, we well versed in T1D.

      1 year ago Log in to Reply
    28. connie ker

      My husband was a juvenile T1D when we married, so I knew enough after watching him seizure, sweat, waiting to eat, timing meals, mixing insulins and the constant horrors of this disease. When I was diagnosed with LADA 16 years into our marriage, I knew enough to be scared, afraid and vigilant to be copliant with dietary changes in the kitchen. 20 years into our marriage, our youngest son was diagnosed with T1D in the 7th grade and he hid in his locked bedroom for an entire weekend unable to accept his fate. He knew way too much for a 13 year old. 20 years later, he is married and a CPA in Chicago on a mini-med pump and I am a widow living alone with T1D saved by the Abbott Freestyle Libre.

      1 year ago Log in to Reply
    29. Chris Albright

      I had a family member that had T1 diabetes, so I knew there was a difference between T1 and T2, but did not know any real details of either (was a child…)

      1 year ago Log in to Reply
    30. lis be

      diagnosed at age 8. all I knew then was how to swim, play soccer and draw comic strips. next thing I remember I was peeing in a cup and droppering urine over clinitest tablets in a tube.

      1 year ago Log in to Reply
    31. Becky Hertz

      I live in a small town. There were two other girls around my age that had diabetes so I knew some information about it before I was diagnosed.

      1 year ago Log in to Reply
    32. kilupx

      Because my brother got juvenile diabetes when he was 10 and I was 9, the whole household learned about diabetes togethe. We all ate my brother’s diet until I grew up and moved away. So when I was diagnosed with Type 1 in my 60s, I thought I knew a lot. And I did compared to most people. But my brother had been dead for some time and I was stunned at the improvements in technology and pharmacology. I remember jars in the bathroom for urine testing and syringes and needles boiling on the stove. I’m so sorry that my brother wasn’t able to take advantage of an insulin pump and CGM.

      2
      1 year ago Log in to Reply
    33. kristina blake

      1975, Dx’d with D. Since I was 30 years old, it was T2D. I had heard of D, but it was still called juvenile onset or adult onset. Since I was an adult, I figured the initial Dx was correct. But I had the classic syntoms of rapid onset T1 (but didn’t know anyone with D to ask, it was pre-internet, and there was o one in my family with any type of D – lots of HCP’s in the family back several generations). Anyway, I was a ballet dancer, slim, fit and got down to 95 bls (I’m 5’6″) and then into DKA coma. That’s how I got the correct Dx. I am very grateful that there are reputable orgs and support groups on the internet so others don’t have to go through what I did – there are places to ask questions. I didn’t know enough to challenge the T2D Dx.

      1 year ago Log in to Reply
      1. Steven Gill

        Like you I was also originally diagnosed TYPE 2 (logical though: I ate everything, drank everything, obese…) but after losing 100 lbs the levels went crazy again. Fortunately for me I was initially terrified and lived at the local library reading everything I could, especially on insulin and the metabolic system. Three years later had to argue with a doc for insulin but he kept saying I was too old to be a TYPE 1 (as if age matters, or even if such a diagnosed was needed to progress to insulin) and kept prescribing meds.

        After finding medical trials the diagnosis was changed to TYPE 1, and the rest its history. By that time I was pretty educated about diabetes and the endocrine system so it was actually an easy adjustment for me. I feel lucky.

        Especially after reading the history here: about no education, no meters, boiling syringes. In my worse day I want to remember their experiences.

        1 year ago Log in to Reply
    34. Molly Jones

      I chose other as I don’t remember what I knew.
      I was thirty but seizure activity was high and affected my memory. I remember purchasing the ADA diabetes book immediately after dx, but not what I knew previously.

      1 year ago Log in to Reply
    35. William Schaffer

      Maternal grandmother developed Type 1 in her mid 60’s [!!] and she told of losing siblings to Type 1 in the pre-insulin era. And her identical twin sister developed Type 1 within the next year [!!!]. Grandmother lived with family off and on for the next 25 years, so I was exposed to it.

      1 year ago Log in to Reply
    36. JuJuB

      I was 3, both unaware and too young. Don’t think my mom knew much though. Heck, it was 1970. Nobody knew much!

      1 year ago Log in to Reply
    37. Rose Lentzke

      I was 4 years old when diagnosed!

      1 year ago Log in to Reply
    38. ConnieT1D62

      I was 7 years old and had never heard of diabetes. And my parents knew nothing about it either. In those days it was called “juvenile diabetes”.

      1 year ago Log in to Reply
    39. Britni

      I was much too young to have known anything about diabetes, but my mother knew enough about it to recognize the symptoms and get me to a doctor before I went into DKA.

      1 year ago Log in to Reply
    40. M C

      As I was a kid when diagnosed, I knew very little about the nitty-gritty of daily living with T1D, but knew of diabetes, both Type 1 and Type 2. I was the first, and to date, only member of our extended family with T1D.

      1 year ago Log in to Reply
    41. persevereT1D52

      dx’d at 17 but my best friend since 11 was T1 and her mother was T2 so I lived it with her but did not know any facts at all.

      1 year ago Log in to Reply
    42. Wanacure

      I had an older first cousin with Type 1. All I knew was that she had to take a shit daily. I’m not sure how old she was when it developed, but I think it was after age 12. It was never discussed with me. But my mother knew heredity was a factor, so she immediately took me to a doctor when she saw how tired I was, and that I was getting up at night to urinate. She and my aunt had probably talked about my cousin. My brother was three years younger than I. He also developed it at age 15. When diagnosed I read the leaflets the doctor gave me, and followed an ā€œexchange diet.ā€ I subscribed to the glossy ADA magazine, Forecast. Like me, my brother at first was in denial. When my cousin got married she wanted to have a baby, which irritated her doctor. ā€œIt will blow her blood sugars to hell.ā€ She may have had a miscarriage, so she and her husband adopted a child. I think her life was shortened by 10 or 20 years.

      1 year ago Log in to Reply

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