Over 2000 Posts da89165 Posted June 12, 2010 Over 2000 Posts Report Share Posted June 12, 2010 For those of you who are applying for disability benefits, this article gives good data on the quality of life and % of disability for those with adrenal insufficiency. I realize this doesn't necessarily apply to everyone, but if you've had a BLA or have ACTH deficiency, this could be helpful to your case. The last page of this article gives the info I'm talking about. ** The numbers are references to the footnotes at the end of the article......sorry the formating is not so great. "Quality of life, disablility, and prognosis Prospective data10 indicate excess mortality in hypopituitarism, including secondary adrenal insufficiency, mainly due to vascular and respiratory disease. However, deficiencies of other hormonal axes could also contribute. Mortality in patients with primary adrenal insufficiency has not been studied. Nevertheless, life expectancy may be reduced as a consequence of unrecognised adrenal crisis, underlying illness?eg, adrenomyeloneuropathy?and other as yet unidentified causes.4 Despite adequate glucocorticoid and mineralocorticoid replacement, health-related quality of life is greatly impaired in patients with primary65 and secondary adrenal insufficiency.143 Predominant complaints are fatigue, lack of energy, depression, and anxiety.65,69,70 In addition, affected women frequently complain about impaired libido. In a survey of 91 individuals, 50% of patients with primary adrenal insufficiency considered themselves unfit to work and 30% needed household help.144 In another survey of 88 individuals the number of patients who received disablility pensions was two to three times higher than in the general population.65 The adverse effect of chronic adrenal insufficiency on health-related quality of life is comparable to that of congestive heart failure.65 However,fine-tuning of glucocorticoid replacement leaves only a narrow margin for improvement, and changes in timing or dose do not result in improved wellbeing.145,146 Dehydroepiandrosterone (DHEA) replacement in adrenal insufficiency can improve wellbeing, mood,69,70,133 and?in women?libido,69 and opens up the prospect of improving quality of life for patients with chronic adrenal insufficiency." AI Seminar published paper Link to comment Share on other sites More sharing options...
mbinig Posted June 12, 2010 Report Share Posted June 12, 2010 Interesting. Does anyone know what kind of respiratory and vascular diseases are associated with hypopituitarism What is the connection?? Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club sowens Posted June 13, 2010 Member of the 1000 Post Club Report Share Posted June 13, 2010 Good find! Link to comment Share on other sites More sharing options...
Steve R Posted June 13, 2010 Report Share Posted June 13, 2010 Gina, Thanks for posting this. Comparing AI to Congestive Heart Failure really puts it into perspective for a lot of people who don't know anything about pituitary disease. Most people just don't understand that pituitary disease presents so many challenges. Thanks, Steve Link to comment Share on other sites More sharing options...
Over 2000 Posts MemberGone Posted June 13, 2010 Over 2000 Posts Report Share Posted June 13, 2010 Gina, this is excellent - thanks for posting! (and I too am wondering about the vascular disease and respiratory link...having had some issues with respiratory stuff in particular at times) Link to comment Share on other sites More sharing options...
SusanM Posted June 13, 2010 Report Share Posted June 13, 2010 The adverse effect of chronic adrenal insufficiency on health-related quality of life iscomparable to that of congestive heart failure.65 This article is a bit disturbing. There doesn't appear to be much research behind the statements other than some limited surveys. It begins by saying that it has not bee studied, but then goes on to make statements. I have had congestive heart failure and I have had (at times) chronic adrenal insufficiency. There is a difference --- a big difference. The congestive heart failure was much worse than the AI. The AI can be quickly resolved with a medication change and did not have the disability effect of the congestive heart failure. In my opinion, this article does much more harm than good. It leads those with AI to think that it is the same as congestive heart failure and it is not doing them a service. Sorry, Gina, but I believe that this is not based on science, but anedotal evidence. Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club ttiffany20191 Posted June 13, 2010 Member of the 1000 Post Club Report Share Posted June 13, 2010 GREAT FIND! Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club sowens Posted June 14, 2010 Member of the 1000 Post Club Report Share Posted June 14, 2010 The article is informative. I didn't get the part where AI was like congestive heart failure, other than we both share the same type of quality of life. I didn't read that it was identical to heart disease. Maybe I missed something. I have chronic AI that is not easily controlled without very large doses of steroids, which cause other problems. Good and bad days...good and bad. Link to comment Share on other sites More sharing options...
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