I have APS IS IT RECOMMENDED TO WEAR... - Hughes Syndrome A...
I have APS IS IT RECOMMENDED TO WEAR A MEDICAL ALERT BRACELET. My Husband is concerned if something were to happen APS will not be detected
Hi there,
If you are taking warfarin, then the clinics recommend you wear a meditag and I had APS put on the bracelet as well as other relevant info.
Hxx.
I have a couple of bracelets, one dressy which I wear all the time when not working, and I have another for at work. I also have a medical alert card in my purse, it's the same size as a credit card and has all my relevant info on it!!
My husband has one because he has Adrenal Insufficiency but when he was told to get it, he was told by an Emergency Dr to put APS/Warfarin on it as well because it saves the Emergency Department and paramedics a lot of problems if you have an accident.
Hi WindsorGirl
I have just read your post i too have APS and on warfarin i found those bracelets very expensive.I make jewellery for a hobby and decided to make one for myself and while at one of the craft fairs i was asked to make quite a few.I make stretchy elastic ones and the macrame (shambala )type you wouldn't believe the amount of people that have asked for other medical bracelets with 'steroids' diabetic type 1 &type 2 and epileptic which i can make no problem.Please message me if you would like any more info.
V x
Hi would you please send me details of your bracelets. As very interested thank you
Hi I’m really sorry I don’t make them anymore . Have a look on eBay I’m sure there was someone selling something similar the last time I looked. Thanks for your enquiry. Xx
I wear a medi tag , and have done for about 7 years. I had a car accident, and as much as I was not seriously injured, I was left shocked and could not speak (just for a short time) and this is what prompted me to get a tag, I was more worried I could not tell paramedics about my meds, rather than anything else! I'm on my second, and it is all little interlinked love hearts, with a larger love heart as the tag carrying all the details!, so they can be very pretty as well as functional. Shop around there are plenty of sights, and varying different costs! Sarah x
Hi there, you have reminded me to take out a membership on here, the bracelet comes at a discounted price with one of those yearly packages. Also I shall take out one for my daughter. Mary F x
Would you send me the info of obtaining or the yearly package on Medical alert membership Please. My Husband is very concerned I Do not have one . Windsor is Not very familiar with Hughes.
Hi if you contact Kate Hindle at the charity she will tell you how to do this! MaryF x
I am on Clexane so have a medical card from Hughes Foundation and also Medic Alert bracelet which I wearwhen out.
Your husband is quite right. (us men always are). I purchased a silver dog tag and silver chain. It was quite expensive and it gave me a rash. In addition to this one of the drugs I was on at the time Dabigatran and I got them to put me back on Warfarin as I deemed it to be safer, hence; the dog-tag did not serve its purpose. However I am getting a wrist bracelet shortly. J
I have a utag ice card - you plug into a usb slot on the computer & enter all the info you need & the hospital put it in theirs & everything is on there for them, med conditions, drugs prescribed & dose
Where can you get this utag purchased.
Utagice.com, ebay, amazon -there are dog tag style necklaces too!
I have worn a bracelet for years and hardly notice on my wrist now as was advised to wear it all the time. With the medic alert one paramedics can phone them and get your medical details as well as next of kin. Wallet card gives lots of details too. Gives me and my husband piece of mind.
It is wisest to wear something and carry a Medical card - please download our charity's factsheet to find out more: hughes-syndrome.org/resourc...
All very interesting - good idea to have all the info on one device, not only accessible but obvious to anyone. The USB tag sounds very interesting. I carry a card for this, a card for that, then a list of meds and next of kin contact details - more cards and bits of data than banknotes in my wallet. Also the USB device can be easily updated and amended as necessary.
More info please?
I had a medic alert bracelet for years, then changed over to the watch version which as I always wear a watch doesn't bother me at all. I was swimming in the sea and lost it, but some kind person returned it to medic alert and I had it back within the week.
As a by the by I had a serious accident and wasn't able to give any personal details a quick call to medic alert and all my details were at the end of a phone. Well worth the annual fee.
Judes and Everyone out there Thankyou for all your feed back. It makes having APA Easier to live with knowing I am not alone.
You can make the bracelet part yourself two lobster claws at each end and reuse the medicalert part for each one! then like the other post, you can have several different ones. It is very important to wear one!
Hi there, I was told by my specialist nurse that I didn't need one, I'm taking 300mg aspirin daily have aps.couldn't believe she said that, got one from the jeweller cost me 35 pounds but is definitely worth it.
I have APS and currently on Herapin injections have never had anyone mention a bracelet! Only thing I have is a medical card to say I am on steriod tablets which is for Lupus and which I keep in my purse.
Absolutely yes, wear a medical chain or bracelet with either the words "AntiPhospholipid Syndrome" on it or other vital info to direct medical care teams to find the info quickly. The utag that plugs into a computer is even better since it has all your vital information available quickly. It is one that is being recommended more often now, but it can be expensive for those on a low income.
A word of warning that was given on a doctor's show about these medical alert chains/bracelets: do not dress them up, do not make them pretty, because EMT's/paramedic's will ignore them thinking these are jewelry. They said to please leave the chain/bracelet on the plain silver chain so they will know to look at it & take the extra needed steps for us. Those of you who have had no problem with the jewelry type chains/bracelets have been very fortunate. But paramedics/EMT's are asking that we please not use them for our own safety's sake.
I thought about getting a Medic Alert bracelet some years ago but was put off by the cost. I toyed with the idea of getting/making one but decided against going that route as I reckoned that a non-standard bracelet wouldn't necessarily be recognised by paramedics etc as important or carrying vital information. Also, I understand that Medic Alert products carry a phone number and reference number which staff can use to ascertain the wearer's medical details, which provides security that a non-standard ('ordinary') bracelet wouldn't give. This thread is convincing me to bite the bullet and get a Medic Alert bracelet!
I have to much to put on a bracelet, so I got an AllerTag necklace. It has a piece of paper that is rolled up inside. It has waterproof 'O' ring, which have kept mine dry down to 50 metres. So you can put your medical info. Emergency contacts, doctor, blood group etc, etc.
I also have a similar list that I carry in my wallet. This has proved invaluable when I have had to go into a hospital where I have not been before. Saves a lot of rime and agro.
I have had a Medic Alert bracelet for ages, several over the years in fact. What is important is that as well as the info on the back, it gives personal ref no and their phone number. Many of us have complex conditions that cannot be covered by the space on any bracelet so the record that is held at their HQ, is far more comprehensive. For example I also have a number of letters on file concerning details of what the bracelet simply refers to as 'difficult intubation' and which should help overcome me not being in a position to explain. I also carry a card and have another in those containers you can get from the Lions which, because of a label on the front door, tells any ambulance staff to look for it in the fridge the recognised spot to keep it (and one in the car). Peace of mind for complicated conditions and for travellers.
having worked as EMS, I can tell you that a lot of time, we did not 'see' the bracelet; I suggest a plain chain medicalert with bright red on it. I have had to use nail polish on mine several times. But please wear something!
Saralee, I wear a necklace on inside of clothes. Would EMS think to look there? I really don't want to wear bracelet that is readily identified by all that I meet but worry the necklace will not be found. Would appreciate your insight. Thanks.
I have so many conditions in addition to APS what should the bracelet say I am warfarin also. Tracey loux
I think I may have to change my bracelet ,it's a gold coloured Sos talisman and looks very much like jewelry, I thought it would be instantly recognisable to emergency services.
Definitely get one! So many things exacerbate or inhibit warfarin in the body, best to have something "speak" for you if you're unable to do so. I wear the necklace every day in addition to carrying the card in my purse. i was amazed at how much type they could fit on the pendant!
I wear one. Being on blood thinners, it's imperative that medics know in case you are incapable of communication. I'm always concerned about car accidents and head injuries. I never take mine off. There are so many cute ones out there. My tag has lobster clasps and I have many bracelets that tag attaches to
I have wore a medical alert bracket since I was diagnosed in 2002 with APS. I wear the racket on my left wrist because I was told that the paramedics check your pulse on the left wrist. It is so very important that anyone with APS wear some type of I.D. showing your medical information. I also have a wallet card but, wearing a bracelet will be seen immediately. They not only have braclets, they also have necklaces with a medical alert pendant. Please, don't be so foolish as to think that nothing will ever happen to me.
LHR
I have thought about this myself I have APS and a lot of other autoimmune diseases but am at a loss of what it should read x
On my bracelet it says "Warfarin" and then I alwas have a paper from my Hematologist with my therapeutic range and my illness. Live in Sweden.
