By this message I would like to let you know about URGENTAL, a new type of card for the first patient assistance (a little bit larger as a credit card) which can save the life of patients with SCLS so as it will contain each patient's medical record (personalized). This French innovation is valid around the world and in the language of the patient. Thanks to this card and the information that it may contain and through the Web via URGENTAL code and a QR Code, the medical emergency team will have an immediate access to the medical records. Faster informed, they can better treat the person arrived in their Emergencies Room. This 24 hours/24 and if no access to the network, this information, saved on a USB key, can be read on computer. And this at a very low cost per year! You can learn more by clicking on www.urgental.com (Information) and by changing the language into English or other. At my personal opinion, this is the best solution I've found because this card (or USB key) which contains all the information and instructions (e.g. The 5-Minute ICU Consult) is immediately readable by emergency personnel, what is vital to us and so we will be more in security and quiet. This card was developed by someone who has been a volunteer rescuer for 44 years and was suffering from the lack of information in the presence of a wounded person because nobody walks with his medical file. Thanks computers and miniaturization this finally was made possible. Hoping to be helpful to all

Thank you Maggy for this precious information it's better than a leave where is write our desease! Take care...

Brilliant! Thank you Maggie

Since learning about my SCLS diagnosis, I have worn a Medicalert bracelet. I believe it is well-known in the U.S. and paramedics will look for this. It has a code and the disease name on the back along with a number they can call to find more information. I also have information stored on their website. So far I have not had to use it, but it is a good back-up just in case. I also have joined Air-Med, so that if I ever need to be airlifted I am covered along with my family. In fact they started a newsletter and I sent them a question and they ended up using it in their newsletter. I asked them if they thought I should stay put to be treated locally or be immediately airlifted back to my home doctor/hospital. Of course the answer was....it depends. If I am in a location where the medical standards are adequate and they can treat me there appropriately then I should stay. If not, they could fly me home and treat me in the air accordingly. I also supplied Air-Med with the 5 Minute ICU consult and they added that to my file in case I ever need their service. Costs from $265 - $325 per year depending who in your family you want to add to the service. Just another way to try and educate others on our condition and to add another level of safety. Barney

hi its very nice to hear about that becouse every time i hade a problem i went to the hospetal and tray to explen for them about leak it was to dificalt ,but now i have a docoment wich writen evrey thig about my problem its help me to much but the ather one my be help us at any where thank you