*I was diagnosed with SCLS a year after the initial onset of symptoms. After having several acute attacks that were months apart, I began to have episodic swelling that was more regular, and wasn't as severe as the first few times. No one knew what I had, and finally I found a new family doctor that was so intrigued by my case he began to research on his own time. (I gave him two binders full of my test results from hospitals, doctors, etc.) He waited until my next episode and ran numerous tests, coming back with very low Albumin levels, hypotension, and a test came back positive for the Monoclonal protein (MGUS.) My diagnosis was given in September 2014. He has since sent me to numerous specialist trying to rule out anything else possible (such as angioedema,) but all came back negative. This year has been unfortunate, with consistent swelling coinciding with the heat, along with the amout of work I am currently doing. Exercise sets it off, along with too much activity, being on my feet too long, etc. Saturday I went to Baylor Dallas and spoke with a very nice doctor who thought I might have Chronic SCLS. She also advised there is not a specialist within the network knowledgeable enough to make the diagnosis and recommended I take a flight to ASAP to the NIH, and meet with Dr Druey. Is Chronic SCLS common? Can the NIH help me? I am having a hard time handling this as it is, and her presumption was that I will only get worse, given that it has only gotten worse. Another question, has anyone ever dealt with brain lesions? A recent MRI revealed two (new) brain lesions... One on my cerebellum, one close to the frontal lobe- with what appears to be a mass in the sinus cavity. I am seeing a neurologist, neurosurgeon, and an ENT surgeon. All have ordered more extensive testing to determine the cause of these lesions. To be frank- I am terrified. I am only 32, and have dealt with far too many problems already throughout my lifetime. I'm becoming more and more exhausted and after a period of swelling, I can sleep anywhere from 24-48 hours straight. My children deserve a mother who can run, play, and they can rely on. I feel like I have failed them, and I don't know what to do. Sigh. I appreciate any help/advice you can offer, and thank you in advance! Sincerely, Christi Denson Dallas, TX

Christi, You are fortunate to find doctors who took a particular personal interest in your condition and have put you on the right path. Make an appointment immediately with Dr. Druey at NIH. He is the foremost authority on SCLS. He can and will help. While I can not answer all your questions, the combination of Dr. Druey and our community expert Arturo will be able to advise you on a course of action. Many of us receive monthly infusion of IVIG. In fact, I am getting mine today and tomorrow. This treatment has prevented almost all recurrences of Capillary Leak attacks. It is a life-saver!!! Having been diagnosed in one year is a blessing. Personally, I went 20 years not knowing what was causing periodic attacks. Talk about nerve racking. Fortunately for me, my attacks were not chronic. You can lead a normal, healthy life-style. I am very physically active. In fact, the doctors told me that I probably survived my attacks because I was in good health. I can work out regularly and my passion is cycling, which I can do without too much worry (heat still impacts my strength) so I am careful. Best of Luck to you. You will find this community to be very helpful and a great resource. Call Dr. Druey today, don't hesitate.