I regret to inform this Community of the recent death of David Colburn (davec), 76 years old and a couple of months away from retirement, apparently from a severe episode of SCLS. David was a distinguished historian, university professor and senior administrator based at the flagship University of Florida, Gainesville, and you may read more details about his life and career in his obituary at https://news.ufl.edu/2019/09/david-colburn/

David had been compliant with his IVIG therapy since December 2015, taking the recommended dose (1 gr/kg every 2 weeks, rather than 2 gr/kg over 2 consecutive days every month), and was episode-free for over three years.  Earlier this year, however, he apparently had two leak episodes which were relatively mild, but then he was hit hard last month (mid-September 2019) and died in the hospital within 24 hours of first feeling ill.

While David is not the first, and probably won't be the last, SCLS patient to fail a prolonged therapy with IVIG -- to my knowledge, he is the second such patient to die in the United States, and several more have died in Europe -- regular infusions of immunoglobulins remain the best treatment option by far for the prevention of episodes of SCLS.

Thanks Arturo for letting us know this very sad news.--Rebekah S.

I'm so sorry.

I am so sorry to hear this sad news

I am really sad to hear of the death of David Colburn. I am convinced that regular continuation of IVIG treatment at the right doses is the best way to avoid an acute leak. At the first signs of "something that is not as usual", additional examinations (or even hospitalization) are required. Best regards to all Patients in this community. Claude Pfefferlé

David , in his emails, was a real gentleman.    Apart from his grappling with SCLS, he also suffered a fairly rapid onset Parkinsons disease which he told me about several times.     I wonder if there is an association between IVIG and Parkinsonian Tremor?    I am healthy, grateful and remain on IVIG religiously, 2g/kg/ month, administered fortnightly over six hours.  I have had to increase my dose of antihypertensives, but also continue with aspirin.  At 74 years, after 5 yrs of SCLS, I find it hard to work out ageing symptoms vs SCLS, but am still able to ride 30km, and am aiming for a half marathon this coming year.  I am just so lucky.

So sad  for that my condolences for his family