This is an unusual time, and this year’s LEAP reflects it well: we start with Covid-19’s very sickest patients, and a Hopkins-wide team’s groundbreaking efforts to illuminate an unusual response in their immune system. We end with a remarkable patient with a rare autoimmune disease: the legendary musician, Peter Frampton, who is not only raising awareness and research funding, but changing medical advice about how to preserve muscle function.
Before I tell you more about this issue of LEAP, I want to tell you how proud I am of the Division of Rheumatology, for how our clinicians, scientists, clinical and administrative leaders, nurses and staff have rallied during this unprecedented pandemic. They adapted on the fly: conducting clinic visits by telemedicine, providing direct Covid-19 care in hospital, continuing research online and directly on Covid in person, completely changing our teaching and instruction to an online format, and collaborating in countless Zoom meetings, while keeping our hospital patients safe with comprehensive new protocols. Our faculty and staff are caring, dedicated, and committed to helping our patients, no matter what. They are truly incredible.
In our cover story (page 2), observations made in Covid-19 patients who were so sick that they were on ventilators soon led a Johns Hopkins team to suspect an autoimmune response. We quickly discovered not only that this was not a regular autoimmune response – but it was very similar to something we had seen in patients with a type of myositis. This therapeutic insight might help patients with severe inflammatory complications of Covid-19.
We also update the pioneering work of John Aucott and Mark Soloski (see page 6) on post-treatment Lyme disease (PTLD), which doesn’t get better despite treatment. They have made new discoveries – a genetic fingerprint, the metabolic response, important changes in the gut microbiome, and tendinopathy-related causes of pain – that have the potential to transform how this disease is treated, and to offer hope to these PTLD “long-haulers.” And of course, their approach might be important for the new Covid-19 “long-haulers” who are flooding clinics.
In two stories (pages 10 and 12), we offer new insights into the events at the very beginning of Sjögren’s Syndrome: Brendan Antiochos is investigating how LINE-1, a bit of misplaced genetic material, prompts an unexpected autoimmune reaction, and Erika Darrah is investigating Xist, a gene that is supposed to silence extra copies of the X chromosome before birth, but which might be abnormally activated in Sjögren’s.
And finally (page 14), one of rock’s greatest legends, guitarist Peter Frampton, has an autoimmune disease called inclusion body myositis (IBM). Not only has he surprised his doctor, Lisa Christopher-Stine, by maintaining his fingers’ ability to play the guitar, and protected muscles in his arms, legs, and core with vigorous exercise: he has given back, raising money for much-needed research with a nationwide concert tour, and raising awareness and hope in his “fellow IBM-ers.”
Each of these stories, in its own way, sheds light and offers hope, and this is my wish for you during this challenging time: that you may find and inspire light and hope, as well.
In the words of Amanda Gorman, at the recent Presidential Inauguration:
The new dawn blooms as we free it For there is always light,
if only we’re brave enough to see it If only we’re brave enough to be it
Antony Rosen, M.D.
Director, Division of Rheumatology
Vice Dean for Research, Johns Hopkins School of Medicine