Dear Cohorts,

I have the chronic form of SCLS, where the swelling and resolving are milder but persistent and frequent. On Sunday, I experienced a serious flare which involved a weight gain of 9 pounds over 2 days. I am home again and resting.

The good news: the emergency physician looked up SCLS and looked at the protocol in this discussion group.

The bad news: she had no access to information regarding the treatment of a chronic flare where the systemic edema may damage tissue and organs, severe dehydration may occur,  fluid management likely varies from acute SCLS crisis, etc.

Applying the protocol for a full blown SCLS crisis to a chronic patient can be not only unhelpful, but dangerous.

Although the term "protocol" has a more precise medical meaning, I use it to stimulate discussion and perhaps research into an algorithm for the management of this serious form of SCLS that can flare as well as trigger a classic SCLS crisis.

Thank you in advance,

Susan

 

Susan, cases of chronic SCLS such as yours have proven to be the toughest to crack and resolve.  My suggestion is that you ask your physician -- the one who knows you best -- to reach out to Dr. Kirk Druey at NIH and see if he has any treatment suggestions to make derived from his experience with other cases of chronic SCLS.  He is the repository of whatever knowledge there is, because he has met and followed several patients like you, so if anyone has what could become the elements of a treatment protocol for chronic leakers, he is the one.

I wish I could be of any additional help.