What I understand is Dr. Druey's final research contribution to the scientific literature on SCLS has now been published: a comprehensive scholarly article titled simply "Systemic Capillary Leak Syndrome" appearing in the journal Nature Reviews Disease Primers, freely available at https://www.nature.com/articles/s41572-024-00571-5.pdf
The article is written by medical scientists for other medical scientists and for physicians who see patients, and so it's not easy reading for us mere patients or caregivers. However, I recommend that everyone download the article and pass it on to your current and any future physicians you see, because it provides a comprehensive summary of what is known -- and not yet known -- about SCLS.
(In terms of what to always have handy and take with you to the Emergency Room, I still recommend that you take the following article, see https://rareshare.org/topics/2192: https://www.acpjournals.org/doi/pdf/10.7326/aimcc.2022.0496?download=true)
It was back in 2008 that I succeeded in recruiting Dr. Kirk Druey, then a mid-career, physician-scientist doing research on asthma at the prestigious U.S. National Institutes of Health, to carry out original research on SCLS -- something he agreed to do but very much on a part-time basis. Finding him was like looking for a needle in a haystack: it took me almost two years to do so because at the time NIH had more than 1,000 staff scientists, and none of them knew anything about SCLS.
In the end, it was a case of serendipity: at a dinner in Washington DC, my wife was randomly seated next to an NIH staff hematologist-scientist. As we learned later, he was very senior and accomplished, so much so that he would go on to win the 2020 Nobel Prize in Medicine. And fortunately, she took the opportunity to ask him if he might be able to help us find someone within NIH who might be willing and able to do some research on a rare blood disorder called SCLS. Miraculously, he agreed, though he told her that it would take him a number of months -- and so it did.
When I met him, Dr. Druey told me not to expect him to find a cure for SCLS within my expected lifetime, because in those years, before treatment with IVIG became increasingly successful and thus common, patients with SCLS usually died within at most 5 years of their first episode. What he committed to do was to carry out original laboratory research on SCLS to determine, at the very least, the cause of the very unusual illness.
Fast forward to 2024, and we still don't really know why some of us -- maybe one in a million -- have the condition. And while we can avail ourselves of a blood product (IVIG) that helps to prevent most of our episodes and thus to lengthen our expected lives, a cure has yet to be found.
This is so despite Dr. Druey's best efforts, as evidenced by the fact that during the past 16 years, he has managed to co-author more than 25 scientific articles on SCLS, see https://pubmed.ncbi.nlm.nih.gov/?term=(Druey%20KM%5BAuthor%5D)%20AND%20(capillary%20leak%5BTitle%2FAbstract%5D)&sort=pubdate
Indeed, as Dr. Druey himself told me a few years ago, "it is ironic that while I've dedicated myself full-time throughout my long scientific career to medical research on the causes and cures for asthma, I will be remembered for my part-time work on SCLS."