Systemic capillary leak syndrome (SCLS), also called Clarkson's disease, is a rare disorder characterized by massive leakage of plasma from blood vessels into nearby body cavities and muscles. The leakage is caused by a sudden and unexplained change in the capillary walls that allows fluid to leak out. Unless treated, this results in a sharp drop in blood pressure that can lead to organ failure and death.

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Early signs and symptoms of systemic capillary leak syndrome (SCLS) can be similar to those of a common cold, involving nasal congestion, runny nose or a cough. This may progress to lightheadedness, weakness, fatigue, nausea, and sudden swelling (edema) of the arms, legs and other parts of the body. Fluid may collect around the heart, lungs and muscles, causing a potentially dangerous situation. Fainting can occur due to a rapid drop in blood pressure from fluid leakage.

SCLS doesn't appear to be inherited. The causes are unknown, but one possibility includes the presence of a chemical that damages or temporarily separates the cells lining the capillary walls, making them leak fluid. Treatment may control the disorder for weeks or even years, but primary SCLS is unlikely to be completely cured. A long-term (chronic), less intense form of SCLS can cause frequent symptoms.

  • Expertise and experience. As one of only a few medical facilities in the world with expertise in SCLS, Mayo Clinic receives a significant number of referrals to diagnose and treat people who have this rare disorder. In addition, Mayo Clinic is a leader in educating doctors about SCLS.
  • Teamwork to manage all your needs. If you have SCLS, you may experience complex medical problems involving many body systems. With Mayo Clinic's multispecialty group practice, you'll have access to a team of specialists to address all of your medical needs.

At Mayo Clinic, we assemble a team of specialists who take the time to listen and thoroughly understand your health issues and concerns. We tailor the care you receive to your personal health care needs. You can trust our specialists to collaborate and offer you the best possible outcomes, safety and service.

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At Mayo Clinic in Arizona, specialists in hematology coordinate the care of your systemic capillary leak syndrome (SCLS) and include other specialists as appropriate.

For appointments or more information, call the Central Appointment Office at 800-446-2279 (toll-free) 8 a.m. to 5 p.m. Mountain Standard Time, Monday through Friday or complete an online appointment request form.

At Mayo Clinic in Florida, specialists in hematology coordinate the care of your SCLS and include other specialists as appropriate.

For appointments or more information, call the Central Appointment Office at 904-953-0853 8 a.m. to 5 p.m. Eastern time, Monday through Friday or complete an online appointment request form.

At Mayo Clinic in Minnesota, specialists in hematology coordinate the care of your SCLS and include other specialists as appropriate.

For appointments or more information, call the Central Appointment Office at 507-538-3270 7 a.m. to 6 p.m. Central time, Monday through Friday or complete an online appointment request form.

See information on patient services at the three Mayo Clinic locations, including transportation options and lodging.

Systemic capillary leak syndrome (SCLS) is difficult to diagnose. Diagnostic tests may include blood and urine tests and imaging studies. Doctors may diagnose sudden, periodic "attacks" of SCLS by detecting concentrated blood and low serum protein in the presence of certain signs and symptoms, such as generalized body swelling, muscle aches, lightheadedness, fatigue, shortness of breath and decreased urination — and by excluding other conditions that could cause these symptoms.

Systemic capillary leak syndrome (SCLS) frequently causes complex medical problems involving many body systems. SCLS "attacks" are typically sudden, although sometimes certain warning signs or symptoms, such as body ache, flu-like symptoms, scratchy throat or dark urine, can alert you. An attack of SCLS may include a marked drop in blood pressure, which if not treated promptly, can lead to multiple organ failure and death. During an episode of SCLS, treatment may include:

  • Fluids. Fluids are given intravenously and carefully controlled to maintain your blood pressure and to prevent damage to vital organs, such as your kidneys, heart and brain.
  • Medications. Your doctor may order medications, such as steroids, diuretics or immunoglobulin, among others. Over the long term, medications are usually prescribed to reduce the frequency and severity of future episodes.

Experts in Mayo Clinic's Hematology Research in Minnesota have conducted research on causes of and treatments for systemic capillary leak syndrome.

Publications

See a list of publications by Mayo Clinic doctors on systemic capillary leak syndrome on PubMed, a service of the National Library of Medicine.

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Nov. 20, 2012