Hi there. Anyone else get this letter? Any clue what's going on or what it means? I've got a friend at NIH who's going to ask around for me. I'll keep you posted.

 

Please, when you may have information, tell us. It's like they sent you to another professional, right?

Hi

Yes, I have received the same letter.  

Will this physician see diagnosed patients that weren't in the study?

Susan

Hello everyone! Yesterday I was finally able to speak at length with Dr. Druey, whom I discovered and recruited back in 2008 to take on – very much on a part-time basis, given the rarity of the disease and thus the likely limited returns from the effort – the first serious biomedical laboratory research on SCLS. (How I found him and enticed him is a long story, because it was hard to do, but then I got lucky.)

At the time and since then, he devoted himself mainly to the study of asthma, but the irony is that if you fast-forward to nowadays, his nearly 25 published, co-authored articles on SCLS during 2010-2023 overshadow his contributions to advancing knowledge on asthma. And he has said that much to me: If he’s going to be remembered for any contribution to knowledge in biomedicine, it will be, ironically, because of his pioneering research on SCLS.

Dr. Druey told me that he had decided to retire from NIH, a U.S. government agency that allows for earlier and more lucrative retirement than is usual in the private sector, as is the case for all civil servants. This was a shocking surprise to me, because he is relatively young, healthy, and energetic, but evidently, he wants to do something else somewhere else – though he doesn’t have another job lined up as of yet.

He also said that he had tried hard to find someone else, at NIH or elsewhere, to carry on doing research on SCLS and making use of the treasure of patient blood, skin, and other research materials that he has accumulated during the past 15 years, but that so far, he had not found anyone that was interested.

However, he gave me the uplifting news that he has two more scientific articles coming out soon that will leave useful tips to anyone else in the world who might be interested, and that before stepping down this summer he will have written a third article, requested of him by a leading journal, that will summarize all that is now known about SCLS.

Moreover, he will soon be meeting (virtually, I think) with some European, Japanese and Korean experts on SCLS to talk about establishing an international (voluntary) registry of SCLS patients. That way, anyone who would like to do research on this illness will know where to gather medical histories and obtain samples or recruit patients for studies without having to start from scratch. (At present, there is only such registry in Europe, based in Paris, but it’s not comprehensive.)

As concerns Dr. Jonathan Lyons, last year he left NIH and is now working as an allergist-immunologist in California, at the University of California San Diego Medical Center Hillcrest, see https://doctor.webmd.com/doctor/jonathan-lyons-73de8640-da91-40af-a5c9-4f9961821d3f-overview and https://npidb.org/doctors/allopathic_osteopathic_physicians/allergy-immunology_207k00000x/1588860076.aspx 

While he has not carried out any research on SCLS, he became familiar with SCLS patients that visited NIH and he learned about the illness from Dr. Druey. In sum, Lyons is no replacement for Druey, but if you live in Southern California and want to be seen by him as a patient, he will see you.

However, as a reminder, we are lucky to have an expert on SCLS in the East Coast, and specifically in New York City, as well as in Paris, France, please see the section on “Tips and Suggestions” on the page https://rareshare.org/communities/systemic-capillary-leak-syndrome#community_details

In sum, Dr. Druey’s retirement is unfortunate news for all of us because he not only carried out the top-quality laboratory research on SCLS that nobody else had or was doing: he made himself available to advise physicians and patients from all over the world, not only on how to treat patients with SCLS, but also how to deal with medical insurance denials and other practical issues that doctors and patients faced. In this last connection, I encourage everyone who was helped or touched by him to write and thank him for all that he has done for us during the past 15 years.

Dr. Druey will be sorely missed.

I was very sad to hear the news of Dr Druey's retirement.  At least in the sense that we will lose a great resource.  I'm of course happy for him, and he has been a great help for me as well as so many other people.

I finally had my first (and last) in-person visit with Dr. Druey on Feb 29 2024, and I think I may have the dubious distinction of being the last patient seen for the SCLS study.  He told us about his retirement during the visit and we were quite surprised.  But all good things come to an end.  He did refer me to Dr Lyons, as Arturo mentioned. He did say he will still be available for another month or two for email.