|
|
Post by ukbill on May 4, 2011 18:14:25 GMT -5
I have recently bought an ICE USB medical alert device Its a small stainless steel USB device that contains a software program which will automatically load when the USB pen is put into any computer. It has the Universal medical alert symbol on both sides and also came with a pair of stainless steel dog tags to get engraved as well. The software is very comprehensive it includes medical history and next of kin type info also there is a large area which is password protected for medical insurance information. I bought it because I have recently taken up motorcycling again.. and you never know... particularly the way I ride  It might be worth a shot in case you are taken ill or are involved in an accident without anybody close who knows of your condition (HFI). I have always been worried in case I am unable to inform emergency medical support people about my condition if I'm taken ill any-time. |
|
|
|
Post by Tammy on May 5, 2011 0:42:31 GMT -5
Is this something that you just carry in your pocket? Or around your neck? The bracelet is good because people know to look for a Medic bracelet, but it'd be nice to have the more detailed info depending on where/how you carry it.
|
|
|
|
Post by charlie on May 5, 2011 15:44:07 GMT -5
The only thing to consider with this on a bracelet, as I think someone has raised before is that if paramedics see it and don't have full info on the condition it may delay lifesaving treatment as they don't know if medicines are safe. I suppose you have to weigh up the pros and cons of riding out fructose symptoms later but being given urgent immediate medicine may save your life.
|
|
|
|
Post by ukbill on May 5, 2011 18:09:05 GMT -5
Mine is on a chain round my neck. I have yet to get the dog tags engraved.
My main worry is being given blood transfusion.. I am worried the blood I will be given might contain high levels of Fructose (left over from the donor) and if I am that ill it might be enough to drop my energy levels too low.
I have put in the notes on the program if being given blood add extra Glucose to counteract the Fructose that will be present in the donor blood.
I have a brother in Law who is a paramedic I'll ask him how they would treat me if they found me at an RTA (Road Traffic Accident)
|
|
|
|
Post by charlie on May 6, 2011 14:58:14 GMT -5
His answer might depend on how well you get on with him!!!  ;)LOL |
|
|
|
Post by Ashleigh on Mar 12, 2013 12:02:44 GMT -5
I was recently diagnosed with HFI after 20+ years and my doctor didn't even want to test me for it because he thought I was self diagnosing myself with a condition he had never heard of. Even after he said that is it but he has no information about it at all, I asked if it was serious he said no. Others who do know about HFI tell me much differently and I am very nervous and am waiting tests for my liver and kidney which have shown signs of bad condition. I have been very lucky and have never been put on a drip but worry about the risks of emergency personnel not knowing my condition.
I think I am going to go the route of getting a medical alert bracelet just so I don't have to worry about the USB getting wet and ruined. I was wondering though what it should say?
if anyone can help that would be amazing.
thank you,
Ashleigh
|
|
|
|
Post by fred on Mar 12, 2013 20:42:02 GMT -5
Hi Ashleigh Welcome to our discussion group. If you have been tested why not join us here. I have a Medic Alert Bracelet that I wear all the time. It was made in the 1960's before they were using the term "HFI" My bracelet says: Blood Type A Pos.
Fructosemia
Hypoglycemia
Sugar Allergy
Give Glucose I also made a book up that I carry in my car at all times and it contains the Medic Alert Information and also two articles on HFI, my fructose tolerance of 100mg per day and a HFI Diet and list of tolerated vegetables. In today's world I would think the bracelet would be better with term "Hereditary Fructose Intolerance" on it as it is a little better known these days. Fred |
|
|
|
Post by ukbill on Mar 13, 2013 6:21:19 GMT -5
Fred that is great but is there Sorbitol in IV meds?? even after several known deaths to HFI'ers in Europe its still not banned and I have discovered still in use in the UK! So I suggest an add on which is "Warning Sorbitol in IV fluids will kill me!" I am going to add this onto to my USB medical alert and now the nicer weather is due to start and I will be Biking a lot more I will get my dog tags engraved as well. Ashleigh some of the medical alert USB devices are waterproof.. mine is only "water resistant" At the time I bought it I could not afford the waterproof version.. (as worn by special forces or so I'm told..) however my stainless steel dog tags which came with it are.. Just got to get them engraved. DOH! Can I add my welcome too Freds? Also it helps if you register and tell us where in the world you reside because a lot of the information on the site is region specific. Things that are safe in one country are not safe in another etc.. Keep smiling,  now you know what is ailing you you will soon feel better than you have done in your entire life! If you do not feel like dancing with joy just yet give it 6 months and I bet you will then Regards Bill A. |
|
|
|
Post by ukbill on Mar 13, 2013 6:39:05 GMT -5
|
|
;)LOL
now you know what is ailing you you will soon feel better than you have done in your entire life!