Hi!
Over the past 4 years I have been suffering with chronic SCLS. This form of SCLS is even more rare and poorly understood than the classic acute SCLS.
SCLS is very rare in Australia and so far there have been no reported cases of chronic SCLS here to assist my treatment plan. Please find attached my case summary.
Due to my chronic protein loosing state, I have qualified for IVIG on the basis of primary immunodeficiency (0.2g/kg). However, this is not the therapeutic dose recommended for SCLS and after 10 months is not sufficient to reduce my symptoms to a level at which my health is not at risk from a severe leak attack. I am working with the amazing Dr Roger Garcia at Royal Prince Alfred Hospital in Sydney. However, in order to seek a higher (therapeutic) dose of 2g/kg we need all the supporting evidence possible that whilst rare, chronic SCLC exists and can often not meet the “classic triad” of SCLS.
I would be so very grateful so any advice, information or case studies that you know of that could support my case. If you yourself have a chronic form - any support or sharing your diagnosis and treatment journey would be amazing!
I, too, have frequent and chronic fluid shifts.
Susan
I have a bunch of articles and published papers on SCLS if you share your email I will forward.
I have had 4 episodes of Capillary Leak Syndrome which required hospital stays with several days in ICU. Fortunately, I recovered but have permanent damage to my nerves and muscle in my lower right calf. My last episode was in January of 2013, which required admittance into ICU. This was my most severe episode and almost resulted in death. I was treated with IVIG while hospitalized and recovered after a long stay.
Upon being discharged, I was able to get certified for IVIG treatments of 2g/kg. I have been religiously going for infusions every month and have not had any episodes.
There are many resources you can find und Disorder Resources on our homepage.
Wishing you all the best.
Robert
Thanks everyone - my email is sophi3hill@gmail.com