I really would like your info on how you handle trips to the Emergency Room when a CLS attack occurs. I have a medical bracelet, a paper on CLS and my doctors suggested treatment with albumin in my wallet. I also have a doctors script that says I need to be seen immediately. Problem 1. ER Attendants seem to want me to wait in the waiting room because I look normal. If I would wait too long to go in, they ask why I waited so long after checking my blood and see the CLS results. Problem 2. Even with the papers I carry and my ER records on the ER computer, new ER Doctors, that have not seen me before, say "I have never heard of CLS". What are we supposed to do for you. Problem 3. My doctor and I are very hesitant for me to travel outside my area due to the lack of knowledge of CLS in other hospitals. How have you set up information with ER rooms and how do you handle ER rooms outside your area. Do you carry instructions with you in case of an incident? It would seem that our survival is dependant on the ER knowledge of CLS.

I have the exact same problems in my local ER. I have been left out in the waiting room for hours and my husbasnd has had to tell them that I could die. The docs ask me what to do so I tell them judicious fluids, monitor blood work and blood pressure. Arturo has a very nice protocol for the acute form of SCLS-I revised it for my specific chronic form of SCLS. I was totally scared to travel anywhere but in the past 4 years I have gradually gotten over it. I actually went to Europe last March. I was very sick the whole time I was there and wound up in the ER in Paris Easter Sunday and signed myself out AMA (long story). I was very glad to have made it back to the states. I love to travel so I might one day go again. Flying seems to exacerbate SCLS for quite a few people-it is actually in the literature and it does seem to cause a SCLS attack for me. My hospital doesn't seem to know SCLS but they do have my records. Initially I carried my medical records with me but I don't do that anymore. It also helps that I haven't needed to be hospitalized for 3 years even with every 5th day leaks.

Our moderator Arturo's doctor has come up with a one page fact sheet which you can give to the EMT and Emergency Room that give specific information on what to do for SCLS. He passed a copy on to me and I keep it in my wallet and have given copies to family and friends. I'm not sure how to share this with you all on the Bulletin Board but let me know if you're interested and I'll try and get it to you. It's important that emergency room know about this since in almost all cases we end up at the ER first.

I would live very much to get a copy of this fact sheet. My daughter has been dianosed with SCLS recently & we've had this same problem. We are finding this web site very helpful.

Allen If you have the fact sheet to be used for the ER rom Arturo, please e-mail a cop to me. or fax. wnbreidigan@verizon.net fax 412-269-5161

Hi Walt, Thanks, I'm going to send it to you via email now. Best, Allen

Hi Allen, Could I ask you to send a copy to me, also - kim.miclon@gmail.com - when you have a minute. (Photoqueen will get a copy from me :-) thanks so much, Kim

I was just diagnosed with SCLS after 6 weeks of episodes. Can someone email me the fact sheet? mdweston@windstream.net. Thanks all.

Hi All, I spoke with Arturo and he said that based on his past hospitilization there were some things in the protocal he would want to change so I don't want to forward it to anyone. Arturo will provide an update to all of us later. Best, Allen

Now that my husband has been diagnosed, I call the hospital and his doctor before we leave home to let them know I am bringing him in with an attack. They know he has no time to spare and are waiting for me in the ER. They take him in a wheelchair directly to the Intensive Care even if his vitals are normal. They know his name and what he has and they know his vitals will change at a moments notice. A good doctor is vital to staying alive. Our doctor actually had seminars at the hospital (Vanderbilt University Medical Center, Nashville, Tn.) to educate all the doctors on staff and the students. We have had excellent care there. He does wear an ID bracelet that tells what he has and it has a compartment that holds a piece a paper with his doctors name and telephone number. We limit our travel to the area. Overseas or a cruise are just out for us. However, we do have a membership with AirEvac which is a medical helicopter service that is in our area which wil pick him up and take him directly to Nashville, Tennessee. We are learning to live with his medical problems and enjoy our bonus years.

Can someone please email me the fact sheet for my wife ! nickdcamp@aol.com Thank you in advance!

I would appreciate a copy of tbe er fact sheet too. Judy Davis had modified it for the chronic form .Does anyone have a copy of it that they could email me? I would appreciate it! My email is: susanfv@gmail.com.

We've made several copies of the flow chart from NIH. We also have the number to get a hold of NIH Doctors and my Doctor As soon as I get into the ER we start passing around copies of the flow chart with that has the phone numbers on the corner. It seems that once the issues are expressed in terms they can understand that they're able to react much more quickly. I was visiting Detroit last Christmas time and had a serious attack and the Dr.'s there had no clue what my problems were. A combination of my Fiance (I was out of it) explaining, the NIH flow charts, and the phone conversations with my Dr.'s basically saved my life.

The ER sheet sounds like a super idea. I do fear sometimes my internist could be out of town during an episode, and crucial time could be lost due to the fact very few doctors know about SCLS. My very first episode, the worst!, i actually laid in the back seat of my husband's truck for three hours. (i could not elevate my head above my heart as this would trigger vomiting). After three hours, a triage nurse finally took my vitals in the truck, ( bp dangerously low), and placed me in an er room. Unfortunately, i was in there another 10 hours before i was finally admitted to the cardiac floor. Ridiculous!!! Looking back now, i know i easily could have died. As soon as i was in my room, the nurses began to set me up and take my vitals again. At this point i think my bp was 58/40, and my heart racing trying to compensate. When the nurses saw this, i was whisked into ICU where i teetered on the edge, no one having a clue as to what was causing all of this.And then came the huge amounts of fluid, along with steroids and dopamine. I definitely could use an ER sheet or a layout of one that my own internist could "fill in the blanks"in case of his absence. sincerely, marilyn

I also think it makes a difference if you're brought in by an ambulance. I've rode in myself and taken an ambulance and I've always been seen faster if brought in by emergency vehicles.

Does anyone know where this list exists? If so please please email me! Thanks! nickdcamp@aol.com

I would like a copy also ! tdfye92@yahoo.com or fax: 920-434-7315 .. Thanks !

I would appreciate a copy too.Im very nervous about upcoming airtravel. Airtravel always causes me to swell but this will be the first flight post scls. 248 671 0382 susanfv@gmail.com ThanksI

Look under disordor resources on this website(rareshare scls). Look for" mayo clinic summary of diagnosis and treatment of scls". That is pretty close to the fact sheet that you all are requesting. Also under disorder details there is a list which includes symptoms,diagnosis and diagnostic tests. Print some copies and keep in your car, work,house(fridge),purse,backpack,drop to local er and get to know them,leave with friends, family and coworkers. The more people on board the better especially if u have the acute form. It is from the mayo clinic so the er will recognize that as significant. Make sure you bring it to the er with you and with copies everywhere that should not be too hard. Insist the doctor read it in front of you immediately( not just the staff). Have someone with you or on the phone to be your advocate. Easy to get disoriented in a crisis and they sometimes listen better to the advocate or if there is more than just the patient. Be persistant. Remember if you educate yourself and those around you about scls you may actually know more than the doctor and they are not used to that:). This can be a life and death situation and don't let up until they acknowledge that and proceed accordingly.

tiggrrr027, Thanks for the information. I appreciate your help!

nickdcamp i hope it helps. this has worked for my brother allen so far but it was a learning process.

Thanks to my sister Linda for advice on going to the ER. And I would emphasize that should should insist that the doctor who is treating you read it in front of you or the advocate who may accompany you to the ER. So many times they do not take the time to read it. It's your right to inform them! Good luck to everyone and stay healthy and have a Happy Thanksgiving!