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Survey of All Users of IVIG

aporzeca Message
30 Jan 2014, 03:59 AM

I'm pleased to report that Dr. Kirk Druey of the U.S. National Institutes of Health (NIH) has sent a questionnaire to all SCLS patients who have been in touch with him over the years, to find out about their experience with any IVIG therapy. The purpose of this survey is to write and publish an article reporting on how successful (or not) that experience has been, what side effects have been bothersome, and related matters. If any SCLS patients, or relatives of patients, who are members of this community have not yet received his questionnaire, please write to Dr. Druey and let him know that you would like to participate in the survey. His contact information is Dr. Kirk Druey, _kdruey@niaid.nih.gov_
Barney Message
30 Jan 2014, 01:36 PM

Thanks, Arturo. Was planning to write a question on the is forum in regards to the survey I recieved. I filled it out immediately and returned it. Look forward to the paper he writes. Please, everyone fill it out and return it. It is one small thing we can do to help each other and ourselves and future sufferers of SCLS, and it could make a big difference around SCLS awareness and treatment options in the medical community. Arturo, could positive results from this survey also lead to more Doctor/Health Insurance approval for use of IVIG with SCLS patients? Or is that just wishful thinking on my part? Barney
aporzeca Message
30 Jan 2014, 02:03 PM

Barney, I expect that if the survey shows, as I anticipate it will, that the result of IVIG therapies in an overwhelming majority of SCLS patients who previously had repeated episodes has been few if any additional episodes, then its eventual publication ought to make it easier for all of us -- and particularly for the next generation of SCLS patients -- to receive, and be covered for, this expensive treatment earlier on after diagnosis. Still, insurance and other approvals in the USA and elsewhere will likely remain on a case-by-case basis, and prescriptions of IVIG therapies to control SCLS will continue to be made on what is called "an off-label" basis. The reason is that the gold standard for medical trials involves running "blind" experiments where some SCLS patients would be given IVIG and others would be told that they are -- but in fact they would be given a look-alike, harmless fluid like saline (salty water). A survey of experience like this one surely helps, but it doesn't provide persuasive scientific evidence because it does not obtain results from a random sample of patients and an experiment under controlled conditions. And yet, as one of my doctors has said, given what we already know through the RareShare grapevine, it would be ethically indefensible, at this point, to run such an experiment and give mere saline to an SCLS patient who has tried everything else and is still suffering from potentially lethal episodes.
elganzory Message
31 Jan 2014, 02:46 PM

Hi Yeasterday i Was writen to DR. Druey ,he ask me to scende to Himalaia all My documentes to stady My cass i ask it you have the report if you plesae send it for me at. yaserelganzory@hotmail.it Thank you Yaser
elganzory Message
31 Jan 2014, 02:58 PM

The problem that ivig is off-label i had this difecalety befor sence i had My last atack , non the ollredy write an studing in a medical website to aprov the efeact of ivig with scls when i have this document i ll send it to all to reslov the insurance problem Trank you God bles all of you Yaser
elganzory Message
31 Jan 2014, 03:02 PM

Sorry for My english i just tray to be a Help for all of us Thankes
dawnfye Message
12 Feb 2014, 10:22 PM

I will email Dr Druey .. Does he email or snail mail it ? Dawn
aporzeca Message
12 Feb 2014, 10:47 PM

His contact information is Dr. Kirk Druey, _kdruey@niaid.nih.gov_
Kimmieroumayah Message
5 Apr 2014, 05:30 PM

Will Dr. Druey send the questionnaire to me even though I have never been in contact with him? I hope this will help insurance companies to approve this treatment. It would be fantastic if IVIG treatments were considered the preferred method of treatment for this condition. These treatments have literally saved my life and helped me to develop a new sense of normal living.
aporzeca Message
5 Apr 2014, 05:35 PM

"If any SCLS patients, or relatives of patients, who are members of this community have not yet received his questionnaire, please write to Dr. Druey and let him know that you would like to participate in the survey. His contact information is Dr. Kirk Druey, _kdruey@niaid.nih.gov_"