Medical Alert Information
There are a number of ways that you can alert medical personnel to your condition, treatments and medicines currently taken.
As Gitelman Syndrome is so rare, this could be vital in ensuring you receive the correct medical treatment quickly in case of an emergency.
Patient Protocol Document
If you are admitted into hospital, it is a good idea to bring with you certain documentation.
You will need to bring a letter of what current medications you are on, as well as a document which has been written by your GP, or consultant, stating what Gitelman Syndrome is, and what treatment you need in a emergency e.g. Emergency Intravenous (IV) of potassium.
As Gitelman Syndrome is so rare most consultants and doctors and nurses are unlikely to have had much medical experience of the condition. Having a letter to hand which you can present to the medical staff would, therefore, be advantageous to you.
Your doctor, or consultant, with your request, needs to write a letter with the protocol of treatment which should be given in an emergency or in the event of your being admitted into hospital.
The document could include information such as the amount of IV potassium and/or magnesium needed and what rate ( e.g. 40mEq run over 6-8 hours). This kind of information is worth mentioning, as is the fact that it is advisable for telemetry and ECG monitoring to be done at the same time as well, as you may not always be coherent, or even conscious, when this information is needed and it could be that vital difference.
Having a rare lifelong illness is difficult especially in an emergency.
It is important that you think about what to do in an emergency health situation and having a medical ID bracelet or band will provide the Paramedics and medical staff with a way of knowing what to do.
It will let them know the medicine you are taking and whether you are allergic to anything. It can also have an emergency contact number to allow next of kin to be contacted in the event of a medical emergency. Most bracelets don’t have too much room for information, so writing the basics like a telephone number, medication list, allergies and, most importantly, instructions to medical staff such as “In an emergency give IV potassium and magnesium”. Although I don’t endorse any particular ID band company, the following are the ones I have had experience with:-
If you have an iPhone, running iOS 8 or later, you can set up emergency contact information which can be accessed from your lock screen. This allows medical personnel to quickly identify who to contact, and can contain as much information as you may want to give about your condition.
To set this up go to the Health App and click on the Medical ID button at the bottom right of the screen.
You can set as many pieces of information as you like from the following list:
emergency contact (and what their relationship is to you e.g. Mother, Spouse etc.)
allergies and reactions
whether you are an organ donor
and even a photo of yourself so they can be sure it’s YOUR medical information.
You can specify at the top of the Medical ID screen as to whether you want it to be available when your phone is locked.
In the case of an emergency, pressing the emergency button from your lockscreen to ring 999/112, will also display a button which says Emergency ID. Clicking this will show the medical details stored in the Health app.
Technology and apps
Technology can be used to help manage your condition. There are many apps, which are often free that can be added to your smart phone, these may include heart and blood pressure (you need to get an add on BP machine to connect), pulse monitoring and alarms of when to take your medication (we all lead busy lives and sometimes forget).
These are :
Medisafe Pill Reminder iTunes| Android
Blood pressure companion (maxwell software) iTunes
Instant Heart Rate iTunes | Android
There is an excellent printable leaflet, produced by RareRenal.org which is handy to keep in your handbag/pocket which can be given to medical staff/doctors if you are admitted to hospital. This gives a lot of information specific to the condition, as well as pointing them to the rarerenal.org website where they can find more medical information.
Download the leaflet below