Hi All! Recently a family member (late 30's, male) was diagnosed with SCLS. He was in ICU and on life support for some days in an out of state hospital, but he was saved and got to come home last night. Very happy occasion for our family. As people who have this diagnosis, do you have any suggestions for helping him as he begins his climb into better health? As an aside, I have been working hard to find resources and options for him to hopefully ease those tasks. Thank you for any thoughts you have! lorraine

Hello Lorraine Whoopy! Certainly the first attack is scary! Then it is followed by the great unknown.. And of course it is just going to take time to get used to living with uncertainty! However, there are a few pointers, none more so than the efficacy of IVIG. Is your relative getting this? It is just soo important! Secondly, the attack seems to have been severe, and what I found personally is that it seems to unbalance much of your homeostasis. Postural hypotension took months to settle, hot/cold intolerance is still not totally ok after two years almost. (And who is counting?). Exercise tolerance is slow to recover. An interesting observation is that many of the 'owners' of this illness had their first attack when physically very active, and the drive to recover this is quite high. Nevertheless, it does recover, and by listening to our bodies we can pace our own recovery. I can assure you that there are few physicians who can 'read' this gradual recovery. Lastly, it is wonderful to have access to Dr Kirk Druey via this website..any medical questions are best addressed to him through the kind offices of your treating physician. And the person who has kept all this together for me, is my wife John

Thank you John! You have added to my knowledge around the recovery from a severe episode with SCLS. I've done just about all I can in terms of providing him with resources and options, including this site. Have pushed IVG pretty hard, and that prednisone treatment over a long period is harmful. Have also given him resources and contact information for Dr. Druey and one of his staff members. I suppose what I am looking for here are suggestions for the well-being part of your experience...even if it's a home cooked meal, or kettle of soup :0) What sorts of things have kept your spirits up or at least level? Sounds like your wife's presence has played a big role!

Hi The point I make is that the disturbance at capillary level is really quite catastrophic, and may take many months to settle. What you can do at 'home' level is to quietly support this slow process. I treasure the scarf somebody knitted as I felt the cold really badly. Others on this site have reported heat intolerance. Others on the site have reported MSG intolerance, as did I. This has settled largely over time, but not completely after 2 years. Muscle pain can be an issue, so a voucher for massage may help. The trick is to listen to what your relative is saying, and slowly encourage him. There were times when I became impatient and tried to exercise my way out of it....didn't work, but not severe enough to end in hospital. In the early days, I needed a rest every afternoon, but this settled after a year or so. My wife had a word or two about this! Ha ha

Hi John, You are a dear to hang in there with me ... much gratitude. Nothing like a nap to replenish mind and body! haha I have PTSD and acutely sensitive to the affects of trauma on our minds and bodies...and yet, cannot not do much to help until a person is ready to hear, and so like you say, encouragement, quiet support is very good advice. Thank you for that reminder. Greetings to your wife!

My suggestion is to encourage the patient to educate him/herself about his diagnosis by joining this Community. Many of our members, myself included, are alive and have a reasonably good quality of life thanks to what we learned here — and only here. Besides, it’s therapeutic to interact with others who provide information and moral support, as you are experiencing.

Hi Arturo, oh, i have shared the link to this community. Have done all the work I could to provide resources and options, now it's up to him going forward. I'm just the "aunty" now.