Addison's Disease Support Group
Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone
I was told to get a medic braclet for Addison's disease. My problem is I do not know what to put on the braclet, can you tell me what you have written on your? I am not sure if I put addisons patient or what I need for an emergency. Thanks in advance...
Also my endo told me I do not need to have an emergency injection shot with me. She only recommends it to people that are 5-10 hours away from a hospital, I felt fine with that advice until I have been reading other members storys.
Also my endo told me I do not need to have an emergency injection shot with me. She only recommends it to people that are 5-10 hours away from a hospital, I felt fine with that advice until I have been reading other members storys.
My every day one only allowed me to put info on the front side of it and it has My Name, Addison's Disease, Steroid Dependent, ICE: (insert contact name and number), and DR #. ICE stand for in case of emergency.
My fancy one allowed me to put stuff on the both sides so the front has the same info as my every day one, except there's an added bottom line saying see back. On the back I listed the meds I take and a 2nd ICE contact.
Dog Tags has my name, Addison's Disease, and steroid dependent on the front, on the back is has my ICE contact, DR, and meds.
Hope this helps, and add all your other meds your allergic to. The company you get the bracelet brom should have a 24/7 on call operator with all your medical information, conditions and all your medications your currently taking. So just put the emergency stuff on the bracelet. Plus medics don't carry cortef or steroids, but they need to know so the hospital knows when you arrive, and then it takes them sticking forever anyways to get you a shot of steroids, as most of us know who have had an emergency.
If you feel uncomfortable not having an emergency kit at home, for peace of mind you could contact your local EMS and provide them with your med info. My MD wrote very specific treatment directions for EMS, 'just in case'. They now carry IV Cortef in their ambulances. I was real uneasy about doing this, but was pleasantly surprised to see how interested they were. You may never require EMS, but it is an option. I've found them to be genuinely dedicated...just so nice.
Aside from the great info Kristen & Treasure offered, I carry a laminated Emergency Card in my wallet, or jogging pack. It has more space, to allow for add'l info, should you need it.
Thanks again.
Joanne
I would go with putting steroid dependent on there for sure, that way the dumbest of dumb EMS/nurse/doctor understands that you require steroids ASAP. I love my doctor but have found that the emergency workers around my area are pretty challenged to say the least when it comes to even taking verbal instructions from me when I'm coherent, I'm afraid of what it would be like if I were out cold or unable to communicate, so hopefully seeing that I'm dependent on steroids will ring a bell.
I ordered my alert bracelets from http://www.americanmedical-id.com/ If you use coupon code RMN at checkout you can get 10% off. American Medical Id runs specials every now and then too where you can get free shipping and other deals. They have great customer service too.
Good luck! Have a great day!
- Kristen
Boy I can't believe ready the scary stories I read last night on people in crisis and with letters and still the wrong treatment. It was on the www.addisons.org.uk Thanks for the input
My Endo also told me to get a Medic Alert bracelet, and we had been looking online for them, but my Granda told me he was going to get me one. He had gotten me an SOS Talisman instead, which is a small silver bracelet with a capsule that unscrews to reveal a piece of paper, on which you can write all your information.
My dad decided to fill it in for me, and he wrote on one side my name, my address, and contact numbers (he wrote his mobile number and my mum's mobile number, as i'm 16 and they are my closest emergency contacts). He then wrote P.T.O., and on the other side, he wrote in huge letters "ADRENAL INSUFFICIENCY (Addison's Disease)".
I found out later than he'd actually filled it in wrong, as I looked at the SOS Talisman website, and on the front page there is a video showing off the bracelet, and it shows you how it is supposed to be filled in. If you want to check it out, here's the link:
http://www.medical-bracelets.co.uk/
And just to add, my Endo also told me that I wouldn't need an emergency injection kit, and I was worried too at first, but then I realised that i'd probably be too scared to administer the injection myself anyway :L. He said to me that if I vomit more than once, or so much that i'm unable to keep my medication down, get to hospital straight away.
Hope you find a good bracelet soon :).
-Claire.
ADDISON"S
Adernal Insuff
Needs stress dose of corticosteroids
It also has a phone number and my medic alert number so if medical people need more info they can call medic alert and find out all my improtant info.This wording was suggested by NADF.
I do not have an injection kit.My endo said because I live so close to the hospital,it really not necessary.
You should check out MEDICALERT .org
I'm sorry I gave you the wrong website for the bracelets; it is actually n-styleid.com. I hope you have good luck finding a nice bracelet. I have three different ones now and they go with most all my clothes.
The NADF (NATIONAL ADREANL DISEASE FOUNDATION) recommends the medic alert state ' Corticosteroids" as other steroids you may be given do NOT have a mineral corticosteroid .
I have a new one that looks like a bead bracelet ...lah dee dah. We will see how long it lasts, as I wear them out about once a year.
I ALWAYS carry my injectable steroid ( this is a superstitious belief that IF I have it, I will never need it). So far, so good. And my emergency pack has traveled the world over and down the Colorado River a number of times.
Following advice from people over the different types of emergency jewellery I settled on a MedicAlert bracelet as the most reliable.
https://secure.medicalert.org.uk/shop.php
I stick with the real MedicAlert, the one where you pay an annual subscription and they keep your details on file, with a 24 hour phone service that also gives full medical details of our emergency treatment to any medical personnel who phone to check.
The wording I have on the bracelet itself just says: Addison's (adrenal insufficiency) acute steroid dependency.
But if you want 'options' Icegems do some pretty stuff: http://www.icegems.co.uk/
Re: injection kits, yes its great if you live by a hospital but I've had to be injected using the injection kit I carry several times. Most memorably was when I collapsed and went into crisis once on a plane and on a train! No hospital nearby there!
So I would fully advise getting one as precautionary measure. It massively reduces your recovery time if you/ whoever you are with, are able to act immediately.
This link provides information on why you need to have your own injection kit: http://www.addisons.org.uk/info/manual/crisismanagement.pdf
But the bit to highlight I've copied below:
"Some doctors are reluctant to issue Addisonians with their own injection kit, believing that they should simply seek emergency help from a hospital or the nearest medical practitioner in the event of serious injury or illness. If this is your doctors view, try to identify the full range of situations in which you might need to use an injection kit and discuss these with them.
For example, do you do a lot of driving? How often do you travel away from home? Do your holidays involve camping or hiking in remote areas, or overseas travel? In rush hour traffic, how long
would it take you to get to your nearest hospital from work or home?"