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Research shows quality of life and disability % for AI


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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

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Interesting. Does anyone know what kind of respiratory and vascular diseases are associated with hypopituitarism What is the connection??

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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 :)

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The adverse effect of chronic adrenal insufficiency on health-related quality of life is

comparable 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.

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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.

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