Hello
My wife was diagnosed with EGPA in February 2015 and is currently taking pred along with half yearly Rituximab infusions.
We have been thinking about getting her a bracelet to record details of her condition/meds in case of an accident/emergency.
Does anyone have experience as to the benefits or otherwise of these bracelets?
I wear a bracelet and also have a blue steroid card from the chemist. I got the bracelet in case no one bothered to check my handbag in the case of an accident!
Yes, have bracelet stating drugs I take, blue steroid card in purse (even though I have now finished them as it gives hospital details) and have set ICE up on my mobile phone which prompted me for drugs, condition and doctor details.
There are two types available , metal or silicone. A friend of mine has a son who will only wear the silicone type. Which type were you looking for?
Hi Thanks for the replies.
Like Piglette, we are concerned that a paramedic etc will not root through my wife's handbag nor check her phone (which does have a full description on the emergency contact page) in the event of an accident.
The reason I raised it is that we are looking at the MedicAlert bracelets which offer a 24/7 telephone number where medical staff can be told details of the individual's condition and meds. I do wonder whether emergency medical staff would actually have the time/inclination to call the number i.e. is it actually worth subscribing to?
Interesting question. My son has severe food allergies, when he was younger he wore a medic alert bracelet as speed and the correct treatment is essential in a severe allergic reaction.
With Vasculitis they certainly need to take your illness into account when treating you but I am not sure that the emergency services would need to know immediately ( unless you have steroid induced Addisons or similar ). Emergency life support is a standard procedure regardless of underlying condition.
Thanks Keyes
Our understanding is that in the event of a traumatic incident (accident/surgery etc) an individual dependent on prednisolone for their steroid requirements would need to have additional doses of pred to enable the body to cope (as presumably the body's own defences will not respond as they would in 'normal circumstances'). However I'm not sure of timescales and would agree that the paramedics will only be concerned to apply life saving measures to enable the patient to be transferred to hospital.
In your experience do medical staff take any notice of the bracelets?
I did work in A&E for a while and can't remember ever nursing a patient where we had to rely on a medic alert bracelet for information. Obviously if a patient was unconscious or unable to give a history then a phone call would be made.
These companies don't hold much information, just diagnosis and medications.
There is a difference between steroid induced Addisons ( where the patient has zero functioning adrenals ) and needs an immediate injection of hydrocortisone ( paramedics have protocols for this ) and needing your daily Prednislone dose IV due to the inability to take oral. A blue steroid card would suffice.
You should also put 'ICE' (In Case of Emergency) and a contact number in your phone.
Paramedics generally look for 'ICE' the number which is generally the person who needs to know - not your GP etc.
Medic Bracelts are good, but you can get very upmarket ones and also necklaces for those who would rather were a necklace and not a bracelet.
If you are unconscious and alone that is when medics look for info.
The first time John was taken to A&E 2 years after diagnosis , about 2003, he suffered a massive relapse after a dinner party one night, although at the time we had no idea what was happening! I wish he had worn a medical bracelet. It took ages for me and my son to explain what vasculitis was to the doctor in A&E that night , let alone start explaining what drugs he was taking. If he had carried a card or something on a bracelet I am sure it might have hurried the whole process on more. Eventually I finally asked the doctors to contact John's consultant.
The medic-alert bracelet originated in the US [some say in Canada, where I live]. It is widely used in North America and my doctor insisted that I get one when I was first diagnosed with Churg-Strauss [now called egpa]. I've worn it for 11 years and am grateful that I've never needed to rely on it. I would say that it is worth it here because when I have been in emergency situations, the triage personnel and first responders take what I say more seriously. Even if they don't phone, they see "Churg-Strauss Syndrome Steroid Therapy" and that fits with my responses. I also think it would be helpful if you travel, because different countries have different protocols. You want to be taken seriously.
I purchased bracelets from a company called mediband for my son
They are the like the plastic wristbands ones sold and worn for charities etc.
All the details including doctors and meds are held on a data base. If you ring the number on the band or email in an emergency everything is there.
You can vary the level of acccess
If the access is made you get immediate notification by email - I did check this a while ago and it works
I think they also do the more standard chains etc. but my son would not wear them.
Thanks all for your replies.
I'm still unsure of the benefit of these bracelets but on balance I think we will go for the medic-alert on the basis of 'better safe than sorry'
Best wishes to all subscribers
Symptoms seem to be increasing but change hourly , daily ,!
Anyone else have the same dilemma?
Looking for hope
