Hello All, I have been privileged to be part of this community for some 2 years, and have ridden the ups and downs of many in the group. In particular, I have been struck by the inequity and difficulty in getting the IVIG, clearly the best treatment around, thanks to Dr Druey, Amoura et al. The problem is that not everybody sees it that way, in particular insurance companies and governments who have to pay for it. I have taken it on myself to commence a survey to gather data on the safety and efficacy of IVIG, and would urge you all to complete it. This is NOT a clinical trial, but may hopefully lead to evidence which becomes convincing enough to achieve this. You may find the survey at: www.capillaryleak.com The survey password is alaska , as evidenced by the beautiful picture of the mountains of alaska on the home page. You are urged to use your rareshare user name. You are able to update the survey as often as needed by changes in your condition by using the same user name. The results will be update monthly. John

Allo, c'est fait !!! merci pour l'info. Josée

John - thank you for taking this issue on and providing information that will help Arturo's efforts. I found the survey very easy to fill out and helpful in telling me about medical issues facing those of us in our community. Davec

Hello John and all, Thank you for this good initiative. I consulted the study but unfortunately I cannot be helpful for you so as my treatment is exclusively made per acupuncture, initiated by the world famous Dr TRAN VIET DZUNG in NICE since June, 1989 after diagnosis SLCS and first severe crisis in April, 1988, without grave effects because very good care upon my arrival at the Emergency Department (C.H.U. NICE – University Hospital) by Doctor J.P. FOURNIER (Professor now). It was a long way but success is down. At that time, I was 45 years old and I will celebrate in this month of October 2016 my 73 years with an acceptable quality of life in relation to this severe disease. As far as I know, 4 or 5 other patients in US and Brazil were also treated at the same manner by Dr. TRAN VIET DZUNG. It is vital to keep hope alive !

Hello Maggy, Thankyou for your posting. This is PRECISELY that sort of response I am trying to elucidate. In designing t he survey, we were petrified that we would only get the mainstream and IVIG respondents. To get any sense of safety and efficacy, we need to encourage all, and that includes you, And you, and you. Please, please, fill out as much as you can. If the IVIG questioned do not apply, then put 'not relevant'. If the question wants to ask your treatment, then put 'acupuncture'. Does it have side effects, how often do you get it? Does it bring on an attack, or is it affected by your elevel of hydration? This is NOT a survey with preconceived and judgemental ideas, To date we have had 9 responses, with 7 on Gammaglobulin, representing nearly 600 months of experience with SCLS, and 350+ months of IVIG. Full results will be posted in the next few weeks. I really encourage you all to follow Maggy's example and become involved in this attempt to help others. John

THE SCLS EXPERIENCE www.capillaryleak.com The results are in for ten people who are receiving treatment for SCLS. Their experience ranges from 10 months to over 10 years since diagnosis. Efficacy 8/10 STARTED ON Theophyllin; Terbutaline; or Steroids alone or in combination. 2/10 remain on the T+T or steroid regime. The rest (8/10) are on successful IgTherapy. Failed therapy had an average trial period of 17 months before eventually giving up. Safety Commonest adverse effects to Ig include headache (5/8); fatigue (4/8); and nausea (3/8) Their experience suggests that factors influencing well-being on therapy include the level of hydration (4/8); and the rate of infusion (3/8), although this last seems very individual. Some can tolerate 400ml/hr, while others are affected by rates over 200ml/hr. Only 1 respondent has had to cease Ig due to adverse effects (allergy). Benefit Figures so far reflect a successful conversion to IgTherapy in all except 1 case. These 8 cases have resulted in 40 years of stable therapy, with an average of over 84 months each, and paid for mainly by Government or Insurance. I would urge as many as possible to complete the survey on www.capillaryleak.com. Remember, the aim is to support those who respond to IgTherapy, T+T therapy, or acupunture or diet. The aim is Not to make any judgement.

John, I'm in the middle of a move and very depleted [not to mention the impact of the US election]. I could participate in the survey in about a week when I find my toothbrush and my sense of irony.

Hello John, thank you very much for doing this and for the initiative, on behalf of my husband I filled in the survey a week ago, hope the survey get lots of support, it is useful knowledge to us all. Thanks again from Denmark. Kristine