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How many of you wear medical alert bracelets?

Discussion in 'General Treatment' started by Gingergrrl, Dec 3, 2014.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I was wondering how many of you guys wear some type of medical alert bracelet listing the things that you are allergic to or could be dangerous for you?

    I feel like my list is now so long that it would never fit onto a bracelet!

    It would need to say:

    1) No Fluoroquinolone antibiotics
    2) No IV saline
    3) No anesthesia
    4) No vaccines
    5) No epinephrine

    I know this must sound weird but I feel all of the above things could potentially kill me due to prior reactions that I have had! Actually I have avoided vaccines and not had a reaction but I have had reactions to the rest of the stuff. How do you guys handle this?
     
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  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I do, but just have it engraved with "Dysautonomia--see wallet card." Then I list all the rest of it--meds, allergies, a bit about dysautonomia do's and don'ts on the wallet card which is actually a "File of Life" packet. I also have all my docs listed and their contact information.

    Sushi
     
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  3. xxRinxx

    xxRinxx

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    I have an ID card saying , Dysautonomia/POTS,and it lists my emergency contact number.I probably do need to keep a wallet card but I always forget@x@ I am never without accompaniment when I go out so I don't really worry about it. Everyone around me knows the protocol by now. Sushi has the best idea though if you don't get 'chaperoned' like I do.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    @Sushi you mentioned this before and every time I think how brilliant it is. Do you remember where you ordered the bracelet from? I think I would like mine to say "dysautonomia-- see wallet card" like yours but also to say allergic to all fluoroquinolone antibiotics. But then I need to figure out exactly what to put on the wallet card AND make sure I have my wallet with me. Today was the first day in weeks that I felt well enough to go out and was at the store and literally forgot my wallet so it is ironic that you wrote that. In general though, it is always in my purse. Was your info from the Dinet website? I know I have asked you this about a million times but promise to write it down this time and follow through.

    @Rinxx I am also curious where you got your ID card if you are comfortable sharing. Did you make it yourself or order from a website?
     
  5. xxRinxx

    xxRinxx

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    I got mine from https://www.hopepaige.com/ ,(it was a halloween sale..My medical ID bracelet is skulls, haha). I'm going to make my own ID card out of an index card though, didn't want to pay extra on anything anywhere.
     
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  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I printed out some things from the old POTSplace site. The site has different things on it now though, some of it is likely the same though. I take that wallet packet everywhere with me--even on a walk or bike ride--because I rarely go out "chaperoned."

    Here is where I got mine--Lauren's Hope. I like the idea behind it. It was started by a Mom whose teenager wouldn't wear a medic alert bracelet because they were so "uncool." So they made cool ones. I dare anyone to look at that site and not find something they like!

    Sushi
    [​IMG]
     
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  7. SDSue

    SDSue Southeast

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    @Sushi, I love the Lauren site. Of course, I have to be the Debbie Downer and ask if medics, etc would recognize that it's a medic alert bracelet in an emergency?
     
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  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, I was told by EMTs that they are trained to look for bracelets and necklaces with the medic alert symbol.

    upload_2014-12-3_22-12-24.jpeg
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    @Sushi and @xxRinxx Thank you for the links and it looks like POTSplace is now Dinet? I put "medical alert bracelet" into their search and didn't come up with anything but will search the website in more detail later b/c I really want to do this.
     
  10. Revel

    Revel Senior Member

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    I wear one. I was concerned that some designs looked too much like fashion jewellery, so I opted for a silicone band type. There were 7 coloured bands with one engraved tag which is interchangeable, so you can wear a different coloured band every day of the week or match it to your outfit.

    I don't wear it very often as I don't get out much. If I did, then I would have probably chosen something prettier, but it serves its purpose and gives me peace of mind.

    Mine says "Dysautonomia", lists my medication and an emergency contact number.

    I have further information in my wallet, next to my organ donor card. However, the latter is probably worthless since the ruling last year that prevents people diagnosed with ME from giving blood - I rather suspect that they won't want my bits and pieces either!
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    @Sushi I went through the whole Dinet website and the POTS place section but couldn't find any information re: a wallet card or packet that you referred to. Do you know if it is still there and I am missing it?
     
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  12. Countrygirl

    Countrygirl ME is not MUS

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    I had intended to purchase one of these, but I was told by (UK) medics that they don't generally take notice of them, especially in the case of ME as they regard it as a psychiatric condition and, therefore, in their view, the patient's opinion would not be credible. If you have a non-disputed diagnosis and easily verifiable disease like diabetes it would be useful, but I can just imagine the reaction of local hospital staff if you wore a medic alert that had any reference to problems associated with ME. They would not take any notice of it as they don't believe ME exists. To claim that you have the illness when admitted as an emergency would mean that you would be regarded as a fruitcake and you would not be taken seriously. It is common for additional conditions to be disregarded, even when potentially serious, if you disclose that you have ME and/or the problems associated with it. I have been advised by a doctor who specialised in ME to always withhold any information about the illness as any additional problems will be ignored and left untreated.
     
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  13. Revel

    Revel Senior Member

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    @Countrygirl, I wear mine because of my POTS, rather than my ME diagnosis.

    When I collapse, although I rarely lose consciousness, I am unable to move my limbs or speak, so I cannot communicate. Since my heart rate and blood pressure might be doing weird things, I thought I ought to wear one to give the medics a clue as to what's going on ;).
     
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  14. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    You can also put a limited amount of information into your phone, but it seems only some EMTs look for this. New phones do come with ICE (in case of emergency) info spots, though. I put my PCP there and a local contact.
     
  15. taniaaust1

    taniaaust1

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    I dont have one cause I cant get out alone anyway so always have someone with me, but I should have one.

    Things must work different on these where I are. With medical alert bracelets here, they let the person know to call a medic alert line where the other then can access the persons medical info (its a 24hr line) via the membership number engraved on it. The medical info is medically authorised info (so something ones doctor has backed up) so info they know they can trust.
     
  16. SDSue

    SDSue Southeast

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    Fascinating, isn't it, with ME being a psychiatric make-believe illness and all. :meh: (sarcasm)
     
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  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    POTsplace is still POTSplace but it is also called Dinet (dysautonomia information network). But you need to join the Dinet forum to search for topics. It has about 3 1/2 thousand members.

    Sushi
     
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  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    My wallet card is from File of Life. They also have red packets that stick on your refrigerator where you can put the same information. In counties that participate in this program, EMT's are alerted by a sticker on your door and will look on your refrigerator. I just printed out a basic description of dysautonomia and the Do's and Don'ts section from POTSplace.

    Sushi
     
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  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    That is one reason why I have listed Dysautonomia which is generally accepted, at least in the US. Also the dangers from emergency treatments (if you are unconscious say) for me, would be mostly things that they might do that would mess with the autonomic nervous system--drugs, anesthesia etc.

    Sushi
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @Sushi and I figured you had to join the Dinet forum to view or search threads and I am planning to join.

    But I also searched the general website and had thought the wallet cards or lists of meds, etc, to avoid might be there but I couldn't find it. Do you have a list of meds etc to avoid? In general with dysautonomia, they assume you need saline which I now know is dangerous for me so my card would have to be very specific!

    I think I am going to get a medic alert bracelet that says dysautonomia and allergic to FQ antibiotics plus see wallet card and then create my own card. I will look at the file of life website too and assume that U.S. Paramedics participate in this program?
     

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