A recent clotting study revealed I have a rare platelet aggregation defect. I have had multiple tests in the past that were normal including VonWillebrand and others. Had my hematologist not thought to order this test specific test I would have never known. I realize that SCLS is a plasma (not RBC) leak. However, I was wondering if anyone else has been diagnosed with a platelet aggregation defect, or have had signs of extended bleeding.

Hi My name is Andrew. You can read my bio, if interested. Just saw yours. I'm successfully having my systemic capilary leak syndrome controlled with Prendidone 25mg daily and IVIG every 4 weeks at this stage. Plan is to wind the steroid down. I'm back on my rode bike, doing 7kms x 2 for the last three weekends. Feeling rather good and pushed myself to 14 kms today and felt this "tingling" in my hands and legs mildly like I Experience when I get tired, I've noticed in my recovery. Noticed you mentioned it in your log. Was going to ask the forum if this was a common symptom with SCLS sufferers. Kind Regards Andrew Davis

To clarify, I do have some symptoms in common with SCLS in that I have edema problems. The main trigger is movement. Exercise is not possible at all. I must lay flat much of the day. I have experienced some hemoconcentration and two episodes of passing out. However, I have not been diagnosed with SCLS and have never had a life threatening episode. Typically my HGB is bleow normal even when swelling. I do have a tingling sensation throughout my abdomen and pelvis before and during sweeling. Tingling in hands and feet only occur after swelling. This entire syndrome began following Zerona laser treatments in 2011. Tingling occuring during every laser treatment. There is something about the low level laser that caused or contributed to the syndrome I am experiencing.

I have a platelet disorder and was diagnosed with Von Willenbrands many years ago.It comes and goes. I have had significant bleeding episodes requiring blood transfusions in the past but not for a a few years now. However I am anemic now and no doctors can figure out the cause. Does anyone else have this? I have been on iron for 5 months but the problem still persists. It just showed up out of the blue and I have not had any significant bleeding that I know of

Andrew, Welcome to our SCLS Community! The first Australian to join us (in mid-2011) was _WazzaACT_, and to my knowledge he was the first to learn through RareShare that IVIG was giving mostly good results in patients who had tried other medications, and he subsequently obtained it for himself -- and then, with the help of his doctors, made sure that future SCLS patients in Australia would get the "gold standard" of treatment ASAP. If you could expand your profile page to include a description of when you had your first episode, how it was managed in which hospital and how you fared, and how quickly you came to be put on an IVIG therapy, for example, those details would be useful. We'd like to hear that the medical community everywhere is increasingly aware of this exceedingly rare illness and has informed itself about how to manage and treat it. Arturo