You are here:

Living With Disabilities/Autonomic Diabetic Neuropathy

Advertisement


Question
Hello there!
I will be brief.
What is the life span of a patient who suffers from Diabetic Autonomic Neuropathy.
I have experience of Diabetic Peripheral Neuropathy, but it has been escalating and converted in Autonomic Neuropathy.
Diagnosed 1 month ago as a severe Autonomic Neuropathy.

Thank You...

Blessings!

Hector

Answer
Dear Hector,

This IS a difficult one! I truly do not wish to disappoint you in terms of my response... however, I do not feel in a position to give you a definitive answer as to what the life span of a person with this condition is. Furthermore, I do not think it would be morally, or ethically, correct for me to do so.

I say this for a number of reasons, not least of which is the fact that I am a personal believer in the reality that NOTHING in life is "cut and dried", and this includes so-called "prognoses" regarding how long a person may live with a particular medical condition. My answer, here, comes from experience. I am aware, from observation of life, that people do NOT always "live up to expectation". Here is an example...

I have known at least four people, all of whom were diagnosed at one time or another with Cancer. Now, of these individuals, one was a young female aged about 20 at the time of diagnosis, another a female aged 38 at the time of diagnosis, the third a male aged in his late fifties, and the fourth a male aged in his twenties. It might also interest you to note that each had a slightly different type of Cancer, some being more aggressive tumours than others.

Of these individuals, the first was treated, and told she was in remission, only for her Cancer to return suddenly, and spread quickly - she sadly passed away aged 21. Hers was a very aggressive Cancer that rapidly invaded her bone marrow. The second female was diagnosed with Breast Cancer after finding a lump (which she was initially told not to worry about, as it was thought to be a cyst!). Despite her delayed diagnosis, she pulled through and is now well. The first male ignored his symptoms for several years, then finally sought a diagnosis. He had Prostate Cancer, which had spread by the time of diagnosis, and which lead to a severe illness. He passed away only a couple of years after diagnosis. The final individual was diagnosed with a facial tumour, and was told following Chemotherapy that nothing more could be done, as it was "terminal". However, this gentleman survived with a supposedly "terminal" Cancer for an astounding 40-plus years! He passed away only a few years ago, in his late 60s!

WHY have I given this example? Well, it is to highlight the huge range of variance between different individuals, even ones who may be classed as having the same, or similar, illnesses. It is VERY important to be aware of the fact that people are all different. No two human beings will be exactly alike, and as a consequence of this, it is very hard to give firm answers to certain questions - ones which ask things like what is "normal" for a person? There is NO "normal"... thus there is no definitive. "Guesstimates" may be offered, but I would much prefer to steer clear of such things. I could, perhaps, have responded by saying that the "average" life expectancy of a person with Diabetic Autonomic Neuropathy is.... BUT, then, the questions would remain... WHAT is "average"? Are YOU "average"?

Put simply, NO two people with Diabetic Autonomic Neuropathy will be exactly the same. There will, instead, be huge variation. Personally, I believe that health professionals need to look at patients HOLISTICALLY - this is because many facets make up the whole - various aspects of an individual (e.g. age, personality, other illnesses, or lifestyle) can affect prognosis. ALL of these factors may have an impact upon how long a person may survive with a given illness. So, in YOUR case, it may be relevant to bear such things in mind.

How old are you? Are you of a determined nature, or does your illness stress you out and get you down? Are you happy to make changes to your lifestyle to take account of the effects of your illness, or to facilitate treatment? Do you have any other illness, the symptoms and effects of which may interact with your Diabetes, or make it worse? THESE are the sorts of questions it may help to ask yourself.

I have also given you the above example in order to highlight a very significant fact. People may be told they are terminal; or told they have "x" number of years to live; but actually OUTLIVE this. I do not always think it is entirely helpful to say to an individual "this is your life expectancy". First of all, because I may just be totally WRONG. Secondly, because this so-called "knowledge" may have an impact upon how that person feels, and on how that person then chooses to live.

Look at it this way... were I to tell somebody they might only live to 40 or 50, there is a possibility that they would fully believe this, and expect it to come true. They might live their life recklessly, thinking they have to "do everything" before a certain age, or feeling that because their life may be "cut short" they have nothing to loose. Or, they might become depressed, and give up on life. WHAT if the age I had told them (their life expectancy) turned out wrong? Might they be angry, or full of regret? Might they have caused irrepairable damage to themselves by living a certain way? Might they have missed out on many otherwise fulfilling years of their life, because of fear, or depression?

Words have significance, meaning, and consequences. Therefore, the thing that I WILL tell you is THIS... Nobody can give you with any certainty your life expectancy. There are too many variables. What CAN be more certain is that if you choose to take control, and do the right things in order to ensure that your illness remains well-managed, then you are in a better state than otherwise (and this will surely affect life expectancy). So, compliance with treatment is important. Maintaining as healthy a diet, and lifestyle, as possible is important. Maintaining a positive outlook is important. Maintaining strong and nurturing relationships (family, friends, people in your support network) is important. Maintaining self-esteem, and personal identity is important. YOU are at the heart of your treatment - the Diabetes is affecting YOUR body, so it makes sense to become your own "physician" in a way. Become "clued up" - familiar with your illness (symptoms, relapse indicators, things like that), become familiar with your treatment (medication, side effects, new treatments being researched).

If you really do remain anxious, or uncertain, about life with the illness that you have, and about prognosis and life expectancy, I would recommend two things -

1. Make an appointment with your Doctor to discuss your concerns. He, or she, knows you best, and will hopefully be fully conversant (i.e. familiar) with your symptoms, and treatment, to date. You need not feel foolish, or a nuisance - many people who are newly diagnosed, or who have progressive conditions that get worse, need additional support at particular times. Your Doctor should be there to provide this support, and to answer questions. It can be stressful, and anxiety-provoking, living with a chronic and/or progressive illness. This is because there is much uncertainty associated with it. Sometimes, however, this anxiety can add to our problems. We may worry about things getting worse, or worry about a change of symptoms, or new symptoms appearing. Your Doctor ought to be able not only to talk through your symptoms and treatment with you, but should also be understanding in terms of any worry you are experiencing.

2. Read the following article (but only if you genuinely feel that you can be impartial - I would not wish you to worry excessively about things that may, or may not, happen). The article  is a study of patients with Diabetic Autonomic Neuropathy, and addresses the issue of life expectancy...

http://www.ncbi.nlm.nih.gov/pubmed/1936671

I hope that this has been of some assistance to you; I would strongly advise you to remember that YOU are an individual, so your case is individual. "Average" life expectancy is just that, an "average" of ALL life expectancies, some long, some shorter. It is not possible to say definitely where YOU would fit. I am sorry if this is a frustrating answer in any way. Still, I much prefer to offer you this honest approach, as opposed to giving you misleading information.

I do wish you all the best.
Regards,
Elaine Ellis.

Living With Disabilities

All Answers


Answers by Expert:


Ask Experts

Volunteer


Elaine Ellis

Expertise

I am happy to respond to a wide variety of questions. I understand that everyone's experience of disability is very personal in nature - dependent upon such factors as circumstances, life experiences, personality, support networks... Therefore, I would expect questions to be highly variable in nature. In the main, I would be happy to respond to questions which ask about the nature of disabilities (conditions), about diagnosis and treatment, about living with disability (its effect upon social and working life), and about means of support. I am also happy to answer questions that many consider to be sensitive, or personal, in nature; I will do so with as much empathy, and sensitivity, as I can. These include questions about the effects of disability upon relationships, or questions relating to the emotional aspect of disability (for example, disability leading to depression). Obviously, I will be unable to respond to questions concerning subjects with which I am unfamiliar, or which require a level of detail in the response that I am simply unable to provide. However, I will generally point out where I am "out of my depth", and will either state this, or will ask permission to research my response a little longer before committing to it.

Experience

My experience in the field of disability is both personal, and professional. I have a B.A. Honours Degree in Social Work (with professional Dip. S.W.) from Lancaster University. I have spent several years working as a Social Worker; initially within Mental Health Services (a medium secure facility), then in a Hospital Discharge Team, and finally in Adult Community Services. I am currently undertaking further "career development", and am part way through postgraduate studies in Psychology. Professionally, I have worked with mentally disordered offenders, with people returning home from hospital, and with elderly and disabled adults living in the community. I have knowledge of the mental health system; of treatments, diagnoses and of side-effects. I also have knowledge of the home care system, and of arranging residential care. Personally, I class myself as a disabled person - although, I must admit that the realisation of this was slow to dawn! I can empathise with many who have for years attempted to cope with as minimal aid as possible, either through lack of knowledge concerning disability rights, or through lack of available assistance. I have long-term health problems that include Endometriosis (a gynaecological condition), chronic respiratory (sinus) problems, Asthma, chronic low Iron levels, and M.E. (chronic fatigue/ fibromyalgia). My Endometriosis was finally diagnosed, after YEARS of suffering, in 2011. I have since had THREE surgeries. I have also had sinus surgery, and am awaiting intensive treatment for my M.E. I trust this qualifies me adequately to assist others with queries concerning disability!

Education/Credentials
O-Levels (with grades): (1987) English Literature (A) English Language (A) Art (A) French (A) German (B) Mathematics (C) Biology (C) Physics (C) Chemistry (C) A-Levels (with grades): (1990) General Studies (B) French (C) English Literature (C) German (C) R.S.A. level one Computer Literacy and Information Technology (1995) Certificate: Teaching English As A Foreign Language (1998) B.A. Honours Degree in European Studies with German (1994) 2:1 B.A. Honours Degree in Social Work with Dip.S.W. (2003) Currently undertaking postgraduate study in Psychology.

©2016 About.com. All rights reserved.