I am sorry if this topic may bother some of my T1D friends. I don’t mean to be negative or something. I want to get the whole picture about this illness.
What is your question? If you’re wondering how long people live with Type1, I myself have nearly 60 years with it - and there are forum members who make me look like a “newbie.”
I know diabetes is scary, especially when you have a child who was recently diagnosed. But try to focus on the positives: those of us with decades of diabetes went many years without even plain old BG meters to gauge how we were doing (we relied on how we felt); we had a very limited number of insulins to “choose from”; and we didn’t have an understanding of carbohydrates and how to use insulin to manage them.
Your son was diagnosed in a time when there is a much greater understanding of diabetes and how to treat it. Now new diabetics have a greater knowledge base and tools to use: there are CGMs with alerts which are much more powerful than pain old fingersticks; there are different types of insulins, some of which may work better than others for a particular patient (doctors can give the best guidance on that based on how the patient responds); and there are and pumps as an alternative to injections - keep in mind that a pump can be a matter of convenience, or a powerful tool for the patient who is willing to use it most responsibly.
With life in general, for a “perfectly healthy person” or a person with a medical condition - making healthful choices goes a long way to towards getting not just many years out of life, but the most life out of those years.
Hi @Glucosebee everyone dies. So the mortality rate for people is 100%. When I was diagnosed (and people who have had T1 for over 40 years) there was no blood sugar meters and no pumps. The doctors told our parents that we would be dead or disabled in 30 years. Some said it outright, some were subtle. I have news for that doctor: I’m still here.
Today it’s more like this: if you take care of your sugar you have the same mortality as everyone else. This is where my belief is currently centered. I know how scary it is to have a kid who is sick. Don’t let fear detract from your time with your children for even one second. Truth be told you have no idea how long this life will last so cherish it every day. I wish you peace, and luck
Thank you for inspiring life story. It is great to heart it. However, my son is still ill, means he can not get up from the bed, he doesn’t feel well. He can not have normal life, which everyone shares here. He misses the school a lot. I read the true life stories about how young people die from it. I want to know the whole pictures. It takes a lot of encourage to admit T1D is life-threatening. I searched 504 from our forum. I think T1D has not get enough supports.
Hi @Glucosebee . I’m sorry to hear your son is not feeling better. Sometimes it can take the body some time to adjust or recover from the extreme highs. I hope your doctor has made you feel welcome to keep in touch with them or their office with your concerns, which will be especially great now that you are managing him at home. If you don’t mind asking, what tools did they give you, and did they give you clear instructions on how to use them? At very minimum you should have a glucose meter although a CGM would be even better. And of course instructions on the insulins he needs, what the difference is and how to use them.
Given your question about mortality it sounds like you have serious concerns about his wellbeing. You didn’t give details about what he is feeling, but If his numbers are high for too long that can result in DKA, a medical emergency; and as a parent you should trust your instincts: so if you feel he needs to go back to the hospital by all means take him to the emergency room and tell them you are worried about DKA is that is the case.
Some offices have a nurse educator who does the teaching - their position means they have more dedicated time to spend than the doctor does. If you feel you need more understanding I encourage you to set up an appointment with one.
@Glucosebee , as has already been written here, 'longevity" depends on any number of factors well beyond “just diabetes”. For instance, I’ve
outaged my father by 20 years, he did not have diabetes, and now I’m midway through my 7th decade with this condition; in a group to which I belong, there have been 17 members who lived longer than 80 years following diagnosis. When I was diagnosed, my doctor [who was president of the AMA at that time, told my family that I might be able to live as many as 10 years; THANKFULLY I wasn’t told that. “Survival” for your son will depend on many factors, many of which are in his hands. A positive attitude with lots of “I can do this, I’m in charge” will lead him through a long, active and productive life.
The science and understanding of diabetes management along with the accompanying technologies and insulin formulations will not only provide your son with knowledge [the power], but also with real-time information for him making decisions. One thing I urge him not to do is to isolate himself and use diabetes as an excuse, but rather accept the power he has to achieve dreams, work hard and be an explorer while and not let diabetes rule him. Put more simply, effective diabetes management can be maintained in the background while permitting him to live life.