Hello, I was recently diagnosed with Narcolepsy with Mild Cataplexy (like a few weeks ago recently). My mom, whom I am very close to, is encouraging me to wear a Medical ID bracelet because there are certain types of anesthesia I shouldn't be put under, I have a few drug allergies, and she's concerned I may have a more serious cataplexy attack than I've had in the past. (I have been showing N symptoms for some time now, but they have been steadily worsening. The doctor thinks this is because of my age, 22, and expects everything to level out around 25.)
The thing is, I haven't told many people about my diagnosis and I don't really want to. I am afraid the bracelet will draw attention to it, and I don't necessarily want extended family members/coworkers to ask me about it. I am a teacher so I have this summer of to decide if I want to wear it to work, but I'm just now sure.
Do any of you guys wear the Medical ID bracelets? What does yours say? Do people ask about very often? Are you open about your N or do you mainly keep it a secret?
I truly appreciate everyone's input. As far as I know, I've never personally met anyone with Narcolepsy.
You cannot tell they are medical ID bracelets if you get the right one. Plus, if you don't make them a conversational piece, no one knows what they say :) I can tell you now, narcolepsy is nothing to be ashamed of, more people have it than you realize.
That bit of nonsense I see I posted above is typical of what I do in the middle of the night with the iPad in front of me. I have dozed off but continued typing. Sorry. I seriously worry that I will try to cook something one night while asleep.
I was a little curious Nel :) Kristin, I ordered a stylish one from Lauren's Hope. i will wear it around this summer and see how I feel about it. Still not sure about wearing it around my incredibly nosy extended family though....
I got my medical ID bracelet from a registered site. I have multiple medical tags on mine due to the fact that I have multiple conditions. Mine is personally engraved with my conditions. However, yes it is recommended you have a bracelet for Narcolepys/cataplexy
I like the id bracelets on Lauren’s room but because I have so many conditions myself and my meds change so often I choose to go with a MyID bracelet that has a barcode that can be scanned my medical professionals and give all of the information that they need. Plus it looks like one of those silicone bands you wear for causes without drawing attention to itself. There are different styles and different colours Hope that helps. I am in my 30’s and struggled with this for a long time. Then I had an attack and couldn’t communicate… The bracelet saved my life because I am highly allergic to albuterol and they were going to give it to me to help me breath before seeing my medical information. Now I’m no longer torn. I have a husband and 3 kids to be here for so wearing the band (which never gets noticed except by medical professionals) for me is just like breathing…a must. Lol. Good luck in your choice.
Regarding your question 'Are you open about your N or do you keep it a secret, read this blog by member Crazy Narcolepsy. Look on her page too for further excellent blogs.
I have not seen the silicone bands like Jennifer described but I am going to look for one like that for myself. My daughter has one for her neurological stuff though that just looks like a "Live Strong" band.
Jensacutie: it’s the sports band sold by Endevr. It’s called MyID. You can see more about them on the website https://www.myidband.com or http://www.endevr.com/id-bracelets/myid/sport. It’s a big step for medical bracelets everywhere. (Especially for those of us that have info like meds that changes frequently or again like me for ppl with multiple conditions. Lauren’s hope has them too and different kinds of medical id bracelets as well. I have one from Lauren’s hope and liked it but with constant info changes it gets really pricey. MyID was 20$ with free shipping and it works with the app right on my phone so while I’m in the drs office if something changes I do it right then and there:). It’s not perfect yet but then again, what is!?!?!? Lol. Hope all of that helps you and your daughter out.
Miss Wooten: I tell people about my narcolepsy and then I tell them what it really is…so many misconceptions out there about what it really is. I figure if just one person hears and says it to someone else then I have created more awareness for it. It’s small but even the smallest stone can cause an Infinite ripple. Those ripples could lead up to a better life. Weather it be meds that work better so we can live or the dream becoming reality someday and there will be a cure. I would even settle for one of those ripples to create a way for early detection to help make it possible to slow down the process or to stop it. Dreams are meant to be heard by those who will go out and share them with others who can then help make it a reality:).
The only thing with scanned bracelets is that in an emergency situation, they may not have time to scan a bar code or have the proper equipment to do so. I have several conditions which are of great importance for first responders to be aware of if I am found unconscious. My medical ID bracelet has these conditions engraved on tags for them to read, along with my important allergies, name and emergency contact. I also have a tag that alerts them to see my extended information card in my wallet. This is a card that folds out and has details of all of my conditions, allergies and so on. I can't be too careful at this point I suppose. I have had too many bad experiences at hospitals and my health only continues to become more complicated :(
The good thing though, is you all are getting bracelets. Your wrist is the first place an emergency responder or medical professional will look for a medical ID or alert type identification. There are several places to get Narcolepsy/Cataplexy bracelets. You can also make your own too, to have a style you like.
I agree with you about not displaying it. I try not to think of it as much as possible. I don't like my identity being focused on it as I am so much more than this disorder. I lived with another woman with N. We had a joke: 2 women with N go to a bar...and fall asleep. But the didn't miss anything as it was Singles' mixer... Maybe you had to be there.
Another fellow I met would fall asleep even with his meds so I decided to focus on behavioural & good sleep hygiene instead
Hey guys, wanted to give everyone an update. Bought a small bracelet from Lauren's Hope. I wear all the time, except at aerial acro classes (jewelry can tear a silk and the clasp hurts to land on in the middle of a back handspring!) I've actually been more open about the Narcolepsy than I thought I would. My coworkers have been really sweet and were just genuinely curious to learn more about it. Most had heard of it, but never really understood it, or the symptoms. I was happy to answer their questions and provide some insight. The only thing that majorly irked me was the people who said "haha, I'm always tired! Maybe I have narcolepsy too!" ....sigh. It makes me want to reply that they don't know the meaning of tired! The exception is still the majority of my extended family...but, let's be honest, there's a lot of things I 'forget' to mention, either because they're all crazy, or because I simply don't want their opinion. lol Ironically, the only people who have blatantly asked about the bracelet...is extended family. I either made up some lame excuse about med allergies (which is true, and is part of what is mentioned on the bracelet) or blatantly told them they were rude. Thank you everyone for all the advice!!! :)
Good idea MissWooten. I have bought myself one too which simply points out that I am a high stroke risk and on medication for it and I feel good to wear it when I am outside the house without a member of family. No-one except my grandkids has noticed it yet but I understand that these days paramedics are supposed to check for bracelets so if I collapse in the street they can take appropriate action.
I was lucky that my daughter was in the house when I had a bad accident and able to give paramedics information that I was incapable of and that’s why I decided it get it.
Mine was inexpensive and is not one of those with a link to an organisation holding my medical records but I did put my GP’s phone number on since I am unlikely to be out of the house outside of surgery hours.
Hey guys, wanted to give everyone an update. Bought a small bracelet from Lauren’s Hope. I wear all the time, except at aerial acro classes (jewelry can tear a silk and the clasp hurts to land on in the middle of a back handspring!) I’ve actually been more open about the Narcolepsy than I thought I would. My coworkers have been really sweet and were just genuinely curious to learn more about it. Most had heard of it, but never really understood it, or the symptoms. I was happy to answer their questions and provide some insight. The only thing that majorly irked me was the people who said “haha, I’m always tired! Maybe I have narcolepsy too!” …sigh. It makes me want to reply that they don’t know the meaning of tired! The exception is still the majority of my extended family…but, let’s be honest, there’s a lot of things I ‘forget’ to mention, either because they’re all crazy, or because I simply don’t want their opinion. lol Ironically, the only people who have blatantly asked about the bracelet…is extended family. I either made up some lame excuse about med allergies (which is true, and is part of what is mentioned on the bracelet) or blatantly told them they were rude. Thank you everyone for all the advice!!!
