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Which advice would you give to someone who has just been diagnosed with Addison Disease?
See some advice from people with experience in Addison Disease to people who have just been diagnosed with Addison Disease
Get involved with a good support group. Understand that even specialist like endocrinologists may never seen a patient with Addison's disease and maybe relying on outdated treatment information. I've found much info that my third endo has been open to learning about through recent clinical trials and studies, such as circadian dosing (taking your steroids every 4-5 hours 4-5 times daily in decreasing amounts to more closely match the body's natural circadian production of cortisol) as opposed to the sixty year old practice of twice a day dosage. Also, insist on an emergency injectable steroid to have in case of illness or injury. Regardless of what endos say, you may not have time to make it to the ER to get treatment for the resulting adrenal crisis. Every clinical guideline for the treatment of Addison's (also known as primary adrenal insufficiency) states that this steroid must be given to patients along with directions on how and when to use it. This can literally mean the difference between life and death and I've personally witnessed death of Addison's sufferers who did not have this.
From Diagnosis and Treatment of Primary Adrenal Insufficiency: An Endocrine Society Clinical Practice Guideline:
"4.5 We recommend that all patients should be equipped with a steroid emergency card and medical alert identification to inform health personnel of the need for increased glucocorticoid doses to avert or treat adrenal crisis and the need of immediate parenteral steroid treatment in the event of an emergency. (Ungraded best practice statement)
4.6 We recommend that every patient should be equipped with a glucocorticoid injection kit for emergency use and be educated on how to use it. (Ungraded best practice statement)
- See more at: http://press.endocrine.org/doi/10.1210/jc.2015-1710#sthash.Jd9j1Fkb.dpuf
From Diagnosis and Treatment of Primary Adrenal Insufficiency: An Endocrine Society Clinical Practice Guideline:
"4.5 We recommend that all patients should be equipped with a steroid emergency card and medical alert identification to inform health personnel of the need for increased glucocorticoid doses to avert or treat adrenal crisis and the need of immediate parenteral steroid treatment in the event of an emergency. (Ungraded best practice statement)
4.6 We recommend that every patient should be equipped with a glucocorticoid injection kit for emergency use and be educated on how to use it. (Ungraded best practice statement)
- See more at: http://press.endocrine.org/doi/10.1210/jc.2015-1710#sthash.Jd9j1Fkb.dpuf
Posted Mar 11, 2017 by justdeirdre 1051
Don't panic all is not lost it takes a while to get back to a normal state after a crisis
Gather as much info as you can
Remember everyone is different so not all Addisons sufferers can do the same stuff
Learn to listen to your body
Gather as much info as you can
Remember everyone is different so not all Addisons sufferers can do the same stuff
Learn to listen to your body
Posted Mar 12, 2017 by S 2350
Information! Have a list on what to do fir crisis. Stress dosing! Inform ur local hospital, school etc. you can keep it under control
Posted Mar 12, 2017 by Vikki 1000
I know it scary and it feels like everything is crashing around you. Remember it could be worse, you can still be a functional part of society and live a long life. Just take care of yourself and never give up. What doesn't kill us makes us stronger.
Posted Apr 27, 2017 by Missy 1650
Learn to listen to your body. Medicate accordingly And learn about the medications. Less is more in most cases but you have to be able to tell when you should adjust.
Posted May 21, 2017 by Jodi 850
Seek out support groups online for further support
Posted Sep 12, 2017 by Tina 2050
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Do the treatment properly, seek knowledge of the disease and assistance of other health professionals: dietician, psychologist, orthomolecular
Posted Jun 24, 2017 by Elineuda 1280
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Or it is easy. The diagnosis we went into a denial we believe is going to happen I have 10 years with the disease each time it gives me a crisis by everyday things like unai
Infection a party etc. entered into a longing for my past life of athlete and partying but knowing and fermented to make support networks and know how to channel the stress has helped me a lot
Infection a party etc. entered into a longing for my past life of athlete and partying but knowing and fermented to make support networks and know how to channel the stress has helped me a lot
Posted Oct 17, 2017 by Lizz 1200
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My first message would be to not feel alone, even though it is a Rare Disease and rare there are many people that are concentrated in groups in which you are supported. I unfortunately do not have that support and I suffered a lot, I felt very alone ..... Up to q with the time I have known people in me same situation and sharing experiences helps a lot.
Posted Oct 18, 2017 by Susana 2000
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This quiet and caring, and I hope you have a good endocrine that it does not re-atiborre to pills and you can have contact with , if you have any crisis
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Do not worry because you do not follow the same pace as the rest in terms of strenuous activities, I myself, keep my rest and with the dose and treatment well calculated, I've been out partying many times, I have worked (as I'm now a teacher), and I've done everything in this world, and I've been immensely happy. Know your limits and everything will go on smoothly.
Above all, keep the shots carefully and not to overdo it when you don't do that
Above all, keep the shots carefully and not to overdo it when you don't do that
Posted Oct 25, 2017 by Seso09 173
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abide by the recommendations medicating peace of mind and attend to the controls as they are sujeridos
Posted Oct 31, 2017 by Dayana 2520
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Calm you will survive.
Posted Nov 6, 2017 by ana carolina 1000
