Dear all,

I have been suffering from a (chronic) systemic capillary leak for about 8 years. In novembre 2018 also a brainstem tumor was diagnosed, based on several scans. No tissue for diagnosis is collected so far. The neuro-surgeon was first considering a glioma but now also a hemangioblastoma, because of the slow development in the time, as well as problably some other diagnoses. Hemangioblastoma;'s can produce EPO and maybe vaso-active metabolites as well. But so far none of the experts sees any linkage between these two rare diseases. We know malignancies and SCLS could have some correlation, but this combination is not known and not described. In any case there is at least one person having both. If there would be another as well, please let me know.

Hiltjo

Dear Hiltjo,

I'm very sorry to hear about what hopefully is a benign tumor in your brain, and I hope that it can be treated or managed, if not removed, once it becomes an issue. I'm not aware of any correlation between brain tumor and SCLS.  I also wouldn't want to leave the impression among our community's members that SCLS and brain tumors are comparably rare: the incidence of SCLS is at most one per million inhabitants, whereas for brain tumors it's dozens per 100,000 -- quite an order of magnitude apart.  It would be good for you to update us on your recent experience with chronic SCLS, because it's the hardest to treat, as many testimonials in our community point out.  Do you continue to take only Imatinib (Gleevec), which normally is used to treat chronic myelogenous leukemia?  How good have been the results?  Have you tried immunoglobulins, intravenous or subcutaneous?  Wishing you better health soon,

Arturo