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A Very Inspiring Blog For Type 1 People

Discussion in 'General Discussion' started by Richard157, Jun 24, 2014.

  1. moco89

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    OK, I am really sorry to hear that and you and your child are going through this.

    I misread your initial post, and while I interpreted the post differently now, I still do not think I interpreted your initial post the way you wanted us to.

    I am really sorry to hear about all of this. :(
     
  2. Richard157

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    Dr. King, head of the Joslin Medalist type 1 study, estimated that about 2000 of the medalists had a special inner protection against serious complications with the eyes, kidneys, and nervous system. He also said that the protection does not help our hearts. There is a Facebook group called "The Joslin Medalists", and many of the members talked about their heart attacks, bypasses, stents, etc. These same members do not have any serious problems with their eyes, kidneys, etc. That is also true with me, I have very good diabetes health after 68 years with type 1, and no complications except for some mild nerve damage.

    You can use your computer browser and search the topics: "Joslin Medalist Program" and "Joslin Medalist Study" for further information.
     
  3. sszyszkiewicz

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    If you were to give advice to our kids what would it be?
     
  4. MHoskins2179

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    Thanks for sharing Christel's post, Richard. Like you, I very much enjoyed reading her post. Though I do understand how parents of CWDs might not find it "inspiring" as it really doesn't offer much hope or certainty for them based on the research itself. Basically, no matter what you do to help protect your kid, there's no guarantee even with tight D-management. That's just type 1. And I suppose it can be a bit depressing, if you let it be. It's inspiring to me to know that researchers like Dr. Laffel and at Joslin are exploring this protective gene theory, and someday might ID it and even be able to replicate it. I hope the message is just that to kids: You can do anything you want, and even IF complications happen after you do your best to reduce risk, you can achieve dreams and succeed.
     
  5. sszyszkiewicz

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    God that was depressing. It may be true, but it was depressing.

    To balance things off a wee bit There was this in the news today, although it is little more than a press release with nothing behind it. Still it cheered me up some.

    http://jewishbusinessnews.com/2014/...opharma-for-the-treatment-of-type-1-diabetes/
     
  6. moco89

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    First, this is a very kind, considerate, and thoughtful post, and I thank you very much for writing this.

    In terms of genetic therapy, it's going to happen first in the UK, where there are strong initiatives for genetic engineering going on as we speak.

    But, there is some fallacy to the last sentence in your post. My adult endocrinologist said to me personally, in the past year, that diabetic autonomic neuropathy is by far the worst complication of all of the diabetes complications (keep in mind that I have an autoimmune, treatable form of autonomic neuropathy--that is potentially reversible, according to case reports--that's how rare this disease is). Anyways, I was actually surprised that she said this and I asked her "why?".

    She said that there is no way whatsoever to treat diabetic autonomic neuropathy. Even peripheral (although it is technically somatic neuropathy) she said that she can prescribe medical foods with alpha lipoic acid (and other molecules) to reverse the damage and reduce the pain involved. With nephropathy, that leads to kidney failure, she can get the patient a kidney transplant or even a kidney/pancreas transplant. With the diabetes-related eye diseases, as long as you see an opthamologist or optometrist on a yearly basis, at a minimum, the progression of the diabetes-related eye diseases can successfully be halted, to a degree well enough to preserve enough vision to where a person does not have a disabling visual impairment. But, there is no way whatsoever to treat diabetic autonomic neuropathy, and you have no idea whatsoever how devastating autonomic neuropathy, of any kind, can be.

    I am one of the few individuals in the world with a treatable form of autonomic neuropathy, and I am forever grateful for the researchers who successfully identified this antibody. I am one of less than approximately 500 people so far who tested positive for a specific antibody that pathologically causes autonomic neuropathy. While I have improved substantially, though very invasive, unpleasant, and risky treatment, the process has been extremely slow, and I have actually started to get worse over the past few weeks, which is extremely concerning. My endocrinologist, cardiologist, gastroenterologist, and urologist were so surprised and elated that I have a treatable form of autonomic neuropathy. In fact, when my cardiologist encounters a patient with disabling cardiac autonomic neuropathy, she actually tests her patients for this disease, even if they have some other "known" cause for the neuropathy, because she feels that her and her patients have nothing to lose by knowing whether or not there was another pathological cause of autonomic neuropathy. She does not want to leave any stones unturned, although last I heard, a few months ago, so far, I am the only one who has tested positive for the antibodies.

    You can be the most optimistic person in the world with autonomic neuropathy, and have infinite amounts of resources to make things better to potentially achieve your dreams, and no matter what, you can fail and not be successful, no matter how driven or determined of a person you are. I started my undergraduate degree in electrical engineering in 2007 at a local-area university. While I was there at that university, I went to school pretty much full-time, even worked 15-20 hours as a computer repair technician (at times), and not only that, juggled around multiple, difficult illnesses, while receiving great grades the whole time I was there.

    Unfortunately, I was literally forced to take medical withdrawal for four semesters from university (I refuse to go into the details on a post, due to how horrible the actual situation was). Three of the semesters, I was physically unable to complete the coursework, purely due to autonomic problems. One semester, I asked the dean for the college of engineering for incompletes in my courses, and he said no, even though I had great grades so far. I had been in and out of the hospital due to autonomic problems and I could tell that I was not going to be able to complete the semester. I went to the Center for Students with Disabilities and I had my counselor advocate for me. After she sent an email, he retaliated against me by sending a really nasty email and he disclosed my disability to unauthorized persons who had nothing to do with getting incompletes.

    He left the assignment of incompletes up to my professors in engineering. Right before finals week, I ended up admitted to the hospital due to autonomic nervous system problems. During all of my engineering finals, I was physically in the hospital, admitted, receiving medical treatment. I was exhausted and sick beyond belief, and I sent out an email to my engineering professors requesting incompletes in my classes because I was receiving medical treatment in the hospital. I even provided a doctor's note. Only one of the three professors gave me an incomplete, and ironically, that was in the class that I completed the least amount of work in that semester.

    The other two professors gave me Fs, including one in which I only missed the final exam (which was 50%) of my grade and two homeworks. I completed all of the other work for that class and I was otherwise in good academic standing. The email from that professor said that he "could not give me an incomplete because the exam was 50% of the grade", and that he would support giving me "medical withdrawal". Even if you eventually receive medical withdrawal, which is a very long-winded process at this university, the engineering college puts you on "engineering probation" even if the Fs are changed to Ws, which puts you at risk for suspension.

    To top it off, I was already sort of suspicious that my autonomic problems were not related to my diabetes. I had very subtle autonomic problems at age 5, when I was diagnosed with diabetes. The situation was so bad and I was scared. Literally when I was in the emergency room which led to the hospital admission, I was Googling symptoms and signs on my phone and I came across this startling Google Books document from 1982. I Googled more and I found that there was an antibody that solely causes autonomic neuropathy and I got very scared. I did not know whether or not I had the antibody (but it turns out I did after my blood was sent to and tested at the Mayo Clinic Laboratories), but I literally started texting some of my friends and even a couple of people on CWD and I told them what I had come across.

    I shared this information with my endocrinologist, who wrote the orders to have me tested for this disease. I waited 3 long weeks for the blood test to come back, and I was not expecting to test positive for the disease (only 40-50% of people with this disease have identified antibodies), but I did.

    While I was waiting for the results of the antibody test to come back, I was offered an extremely competitive, highly coveted internship with a company that virtually any electrical engineering student dreams of interning with, with a company that starts with IN (and ends with) TEL (I don't want this to be indexed on search engines) for six months, in Folsom, CA. When I received the phone call from this company, they were all excited to talk to me. I had been discharged from the hospital only a few days ago, and I was literally going in-and-out of the hospital with being admitted and discharged. In addition, I was unable to complete the previous semester and had Fs on my transcript. I also had to quit my job as a computer repair technician, which at the time, I was only working occassional/seasonal, where my work let me chose my own hours due to my disability (by the way, I am also never supposed to get a job "where I have to work on my feet", by the order of my cardiologist). I was waiting for the results of the antibody test (although I literally thought it was going to be a crap shoot and I was going to test negative), and between all of the events, I knew that I was not in a position to accept the internship. The person at the company was shocked that I was not going to take the internship (I told her that I had an extenuating circumstance--and I really could not take the internship), and she asked if "I was sure", multiple times and she just sighed and hung up the phone. I was so excited and honored that I would be offered an internship like that, but for a long time, it literally made me sick that I had to decline such an opportunity.

    Due to my medical situation, and all of the treatments involved, I had to take 2 years off from school. I was physically unable to go to school. I came back after 2 years, and I had one last semester at this local university. Even with general academic accommodations, such as "extended testing time" and "occasional extension of due dates", I had to fervently advocate for those accommodations with the engineering college every single semester I tooke engineering classes. Sometimes engineering professors refused to give the specific accommodations I was entitled to (the official accommodation policy allows professors to "line-item veto" individual accommodations, if the professor feels that the accommodations are not appropriate for the class. Back when I was a student there, the written policy was much more lenient towards the professors, and all the professor had to do was refuse to accommodate you by just saying it--now the professors have to "reject" the accommodation(s) in writing *and* notify the department chair (supervisor), and there is this appeals process that is a huge hassle that is the disabled student's burden).

    Anyways, every semester I was at this school there was an accommodation dispute in engineering, that I either had to take it up individually with the professor or the chair of the respective department involved. In addition, the professors had a hard time believing that I would need things like extensions of due dates, even when I provided specific notes about my disability (it's actually illegal for a professor to request that sort of specific documentation--and they did request disability-specific documentation).

    My final semester at the school, I went part time, taking two engineering courses, and I did really well until a treatment I was receiving started becoming ineffective. My neurologist had me switch treatments in the middle of the semester, due to the deterioration of my health, and due to a side-effect of the treatment, I ended up with a life-threatening infection. I was in the hospital for four days, and I was physically unable to complete the semester due to the escalation of symptoms and the effect that the infection had on my body.

    I requested medical withdrawal and provided documentation, and my grades were eventually changed from Fs to Ws for that semester. A few months later, right before I was to take classes again, for the following semester, I decided that I needed to meet with my engineering undergraduate advisor. The meeting started out with "how are you doing?" and then she brought up that "they" (engineering college administrators--I don't know who was specifically involved) had brought up how I had "took medical withdrawal four times". She told me that "they" were considering giving me Fs instead of Ws, if I were to take medical withdrawal again (the policy at this school allows a professor to assign either an W or an F--but it's typically a W--at the professor's discretion). "They" were also talking about not letting me repeat engineering classes due to taking medical withdrawals--entirely due to non-academic reasons--my GPA is considered "strong", even by them.
     
    Last edited: Jun 26, 2014
  7. moco89

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    I was so angry when I heard this. You have no idea. I asked her "who was at the meeting" and she didn't reply. I decided to act like it was "no big deal" and this advisor tried to help me, even though she was powerless. I drove home absolutely furious beyond belief. I had already considered transferring out of this school due to the hardships I encountered, especially after the semester when the school refused to give me incompletes. This was the absolute final straw. The engineering college administration was considering assessing penalties that could leave me without a job, degree, or both, and I could tell from their past and current track record that nobody had any intentions of working with me or helping me.

    Also, in my state there is a law, in the state education code, where if you take too many credits (hours) that do not count towards your degree, even due to medical withdrawals, the school is allowed to charge you out-of-state tuition. Due to the fourth medical withdrawal (even though my academic record was fine--besides my medical problems) I had hit the enrollment cap and I would have to pay out-of-state tuition for any coursework as an undergraduate in this particular state, from then on. The provost of the university has discretionatory abilities to accept or decline an appeal, and according the the office that does medical withdrawals, he only "sometimes" grants the appeals. If the appeal was granted, by state law in the education code, the school would not get reimbursed even though I am a resident, because of these "excess undergraduate hours".

    I was strongly considering filing Office of Civil Rights complaints due to my extreme academic hardship caused by this university. I worked extremely hard, no matter how sick I was, and I was treated like dirt (and was probably discriminated against--but that is truly up to the OCR to decide). I decided that going to this university was not worth it, because in the end, my records could be severely marred to the point where I could not get a job, a degree or both.

    I transferred out of this terrible program, and now I am going to school online, completing my degree in electrical engineering in an accredited program. I was scared to "jump ship" and move on because I thought I would be trading one problem for another. My new university is extremely compassionate and understanding towards my situation and I have no trouble whatsoever getting accommodations. I was expecting a "honeymoon period" because I was a new student, but I am still treated with the exact same respect and dignity that I deserve to receive. I am not completing as many credits as I would want, due to my medical situation, but I could not be happier with the school or my decision.

    I am really sorry for the long post. Please realize that diabetic autonomic neuropathy is not treatable, diabetes complications are unrationally stigmatized, and you can try your best no matter what and be extremely determined and you can still fail. While I have improved dramatically (but I have been getting worse recently), I am still unable to go to school like a typical person, complete credits like a typical person, and I certainly am unable to hold a job at this point of time.

    I know young people with diabetic autonomic neuropathy who are very disabled, although those individuals are not nearly as disabled as me. A lot of dreams have been shattered by this particular diabetes complication that has no treatment.
     
  8. rgcainmd

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    moco89, I am so sorry to hear about how you were so thoroughly and unjustly screwed over, especially in light of the tremendous amount of effort you put into realizing your dream. I am greatly impressed by the fact that you are still pursuing your degree despite everything you've been through. I wish you the absolute best.
     
  9. sszyszkiewicz

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    I looked at the training materials we had after diagnosis, and nowhere is "diabetic autonomic neuropathy" even mentioned. Yes they mentioned neuropathy, but did not call out this specific kind. I hate to even ask the question but how prevalent is this?
     
  10. moco89

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    Thank you for your kindness. More than anything, I want my degree. Actually, the more difficult it becomes and the harder I have to work for it, the more I actually want it. :)
     
  11. moco89

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    I do not want to post this publicly, as I do not feel that this is the right thing to do. Likely, the most honest interpretation of diabetes complications is going to be with a discussion between you and (your child's) doctor(s).

    Because you truly want to know, I am going to PM you the results for the EDIC (which is a continuation of the DCCT that went on for several years) with respect to cardiovascular diabetic autonomic neuropathy (that was the only form of autonomic neuropathy which was tested for--I believe). There are other studies or sources that I can reference, that can either have much lower rates of diabetic autonomic neuropathy, or much higher rates, depending on what was tested for and the tests used.

    Either way, it is clear that long-term diabetes complications, in the general sense, can happen to anyone.
     

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