I recently (late August) had the opportunity to attend a specialized medical conference sponsored by the Mayo Clinic which included the first-ever scientific session on Systemic Capillary Leak Syndrome.
The event took place in lovely Mackinac Island, an idyllic setting in northern Michigan, and it brought together about 50 of the world’s leading experts on angiogenesis, which is the physiological process involving the growth of new blood vessels from pre-existing ones. It’s a hot topic for many scientists who are focused on the biological roots of cancer, because the growth of new blood vessels is necessary for cancerous tumors to keep growing and spreading.
And since these scientists know a lot about how capillaries behave, the Mayo Clinic’s Dr. Philip Greipp thought the attendees may have some ideas about why our capillaries sometimes leak the way they do.
The session was chaired by Dr. Greipp and featured 4 invited speakers. The first was the renowned Dr. Bayard Clarkson, the doctor who published in 1960 a detailed report on the case of a woman from New York in her 30s who suffered from mostly monthly episodes of a strange illness never before described in the medical literature. (Similar cases published afterwards gave the strange illness the name “Clarkson’s Disease” or SCLS.)
He retold his patient's story and pointed out all the symptoms that have not been figured out in the more than 50 years that have transpired since he treated her, but which might provide clues as to what should be researched in the future.
The second speaker was Prashant Kapoor, a doctor who summarized the experience with SCLS patients that have been seen and treated at the Mayo Clinic. The presentation was a summary of a recent article highlighted in the Disorder Resources section of this website, “Idiopathic Systemic Capillary Leak Syndrome (Clarkson’s Disease): The Mayo Clinic Experience.”
The third speaker was Kirk Druey, the medical researcher at the National Institutes of Health who has been testing many of us patients to try to figure out what is wrong with our blood vessels, and particularly with the endothelial cells that line our capillaries. He has recently co-authored (with Dr. Greipp) a survey article on SCLS that is likewise highlighted in the Disorder Resources section of this website, “Narrative Review: The Systemic Capillary Leak Syndrome.”
And the fourth speaker was yours truly, who presented a patient perspective, telling the story of my 5-year struggle with SCLS and what progress my doctors have made in terms of treating my many episodes with the least amount of suffering, collateral damage, time and expense, and also in terms of preventing episodes with various medications, the most successful of which appears to be IVIG. (A copy of my presentation, “Advances in SCLS Episode Management and Prevention,” is available upon request to aporzeca@american.edu.)
At the end of the presentation, various scientists in attendance asked questions and made suggestions of hypotheses to be tested or experiments to be run. (Needless to say, I didn’t understand what they were talking about, but fortunately the likes of Dr. Druey and Dr. Greipp did!)
The funniest moment was when the 85-year-old Dr. Clarkson said that the next day (Saturday) he unfortunately would have to leave the conference to attend a family reunion that had already started. He said that when he told his close relatives how come he would be arriving a day late -- namely, because he was giving a talk about "Clarkson's Disease" -- he realized that he had never told anybody in his family that there WAS an exceedingly rare disease named after him, such that everybody was shocked to find that out. Therefore, he was really grateful to the conference organizers for inviting him, because otherwise he might never have told even his immediate family about Clarkson's Disease!