On Dec. 28, 2009, my husband caught the cold or flu I had suffered from the week before (I had all my flu shots so it wasn't H1N1, but my husband did not). He was sick with the illness for three days (which included a very deep and painful cough), before waking up on the 4th day feeling better. He got up and got ready for work, and an hour later he was on the floor groaning and complaining of back pain. (He had a bulged disk surgery 4 years earlier, and we were used to back pain episodes). As the day progressed, his flu symptoms returned and worsened over the course of the day. He started vomitting and seemed confused. A call to a health provider told me to give him lots of fluids and call them back if he became dehyrdrated. I went out to the store to get some juice, and when I returned he had started turning blue. I called for an ambulance, and we almost lost him in ER. We were quickly admitted to ICU, where he was diagnosed as septic. The fluids administered to him caused him to swell to 300lbs. and he required 4-limb fasciotomies. This combined with shock caused full renal failure. We spent 14 days in ICU. Two months later, he is still in hospital recovering from all the complications. He is recovering from the fasciotomies quickly, but he recovers from everything else slowly. It took 3 days with 0 sedative to wake him up in ICU. His kidneys came back only 1.5 weeks ago. And he still experiences bouts of confusion and delirium, although we are finally seeing progress there. He also now has 2 new infections as a result of lines and catheters, but he is responding well to treatment for them. Although initially diagnosed with sepsis, they were unable to find a source of infection or grow a culture. A virus was identified to explain his preceding illness, but it's metapneumovirus which they don't feel is a contributor. That leads my husband's doctors to the diagnosis of SCLS. One problem is the doctors in the hospital rotate every 2 weeks, which makes me worry about the level of progress in deciding on a treatment. So until my husband is well enough to be discharged and has a permanent doctor looking after him, I'm at a loss as to how to help. I have spoken to Dr. Greipp and passed along his contact info, but again we are starting with a new doctor rotation. So for now, we live at the hospital and try to progress with his physiotherapy. He will need leg braces for his feet, so I'm also getting ready for alternate housing situations (we own a 3-story walk-up apartment, and I'm unsure he will be able to handle the 24 stairs it takes to get home). So for now, it just feels like we are waiting for answers.

So sorry for everything that has happened to your husband. My broher had a similar first episode 6years ago. It is like a train wreck at first. The good thing is that he appears to have been diagnosed fairly quickly. In the past it has taken several months or years to have that happen for many . Also you have found Dr. Greipp which is outstanding. The hospital in washington dc where my brother was is similar with staff rotations. He had another episode this past september so he has been there twice. What we have learned is that in that situation you have to be your own advocate. You need to make sure you do this in addition to your husband as he may not be able to. Talk to the nurses and attending doctors. If you don't get answers ask for the chief attending physician or head of the department. Print the information from disorder details on this website which includes tests and treatment and also information from mayo clinic website on SCLS and have them put it with his hospital record and keep it on file there in case it happens again . Keep a copy with you at all times. Give it to new doctors and make them read it in front of you before starting new treatment. Usually doctors know more than patients but because SCLS is so rare many times they will need to be updated and eventually you may know just as much as they do. Most of the time it is not SCLS that causes the complications that your husband experienced but the treatment or I should say over treatment given in hospitals because of too much fluid given because they are not familiar with SCLS and it's treatment protocal. My brother takes theophylline, gets yearly flu shots, rests when tired, has a healthy lifestyle and only had 2nd episode when he reduced theophylline. He wears an alert bracelet, has an epipen(epinephrine), keeps his paperwork handy and always has his theophylline with him so he takes it on time. He has braces from dropped foot and could not walk or lift a 5 pound weight to begin with. Now he walks so fast I have to run to keep up with him. A year after his first episode we hiked to the top of diamond head in hawaii (like a million steps but had a railing). He can walk short distance with no braces too. He works full time with a job that requires international travel. He just came back from costa rica and will go to indonesia soon. Not everyone with SCLS is the same. My brother has only has the 2 episodes and does well the rest of the time as long as he takes the theophylline . Some people have smaller more frequent episodes so harder to travel etc. When he was diagnosed by Dr. Greipp and Dr Haymons of the mayo clinic 6 years ago I remember fighting back tears as it poured rain outside. My brother seemed relieved to find out what was wrong and simply asked "what now? ". Dr haymons said for him to go live life, never restricted travel, and that it could happen again but it might not. Sort of like you can't live in fear because it might happen. If it does be informed and prepared. Not everyone is the same but it has worked for him. Right now it seems impossible but try to keep a positive attitude. SCLS will always be part of your life but things should get better. We will keep you in our prayers and hope he gets to come home soon. Linda

Bonjour Josephite, vous habitez dans quelle province du Canada. moi, j'habite au Québec, j'ai le même age que vous (39 ans), j'ai le SCLS depuis Mars 2006. j'ai été très malade de janvier à aout 2008 (hospitalisation à tous les semaine). Maintenant, tout va bien, je reçois depuis 1 an et demi des traitements mensuels très efficaces (immunoglobulines). alors si vous avez des questions, n'hésitez pas. (vous pouvez le faire en anglais) Josée. courriel: foresteriesdj@cableamos.com

Thank you Linda and Josee for your responses. I feel much better after hearing from you. My greatest fear was we would be bound to our home just waiting around for another attack to happen. I even considered moving across the street from the hospital (even though we live close enough). It helps to hear that there are others with this condition living full lives. Linda, your brother's story gives me hope we may travel again one day, as we had many plans to do that. Life stories are always more encouraging than statistics, so I thank you for that. Josee, we live in Alberta, and my husband is 42 years old. I'm not sure we will be able to start with IVIg right away. But I am thankful to hear from you as I may have questions about it later. I am glad that it is working for you and you are doing well. We are lucky to be in a very modern ward in our hospital, as most hospitals in our province are in pretty rough shape right now. It not only has doctors and patients, but also teaching and research components. So, all the staff that work on my husband tend to be the types that are thirsty for knowledge. I hope that will work in our favour. Thanks again, and thank you Arturo for maintaining this community.

I also live with ISCLS (you can refer to Ruth Nolan's Journey on this web site) although I have had many visits to hospital with surgery due to my very first episode I have only had two subsequence episodes and they have been very much less invasive than my first. I also work, I am a teacher of children with special needs, and managed a full life most of the time. I all ways read my body and rest when I am tired! I take no medication at this stage and find this suits me as I am not sure about the side effects? Life does get much less stressful and you worry less as time goes on. A huge thank you to all who contribute to this site as it makes it a lot less of what could be a lonely journey. I see ISCLS as a gift to me so I make sure we make the most of each and every day with my family, friends and my faith. Take care Ruth Nolan Christchurch New Zealand :-)

Thanks for sharing your story Ruth. I'm glad your subsequent episodes have been lesser in nature. You mention you always rest when you are tired, and I have heard a few others say the same thing. I am curious as to how the tiredness relates to SCLS. Is it a possible indicator of an episode, or is it more of a plan to take care of yourself and keep the body in good condition? Thanks again for sharing, you are a very strong person.

I have periods of feeling really tired so at the on set I rest. I really am not sure if this part of ISCLS however I suspect so? I think ISCLS is a really huge assault on the body and maybe this leads to the tiredness? After having an ISCLS attack you learn to treat yourself and your body... so resting has to be good :-) Take care just take one day at a time for a while and you you will get to enjoy life again! Ruth :-)