I recently read a very sad article about a little 5-year-old boy who died all of a sudden during a summer vacation. His father described him as being a happy and healthy little boy, but all of a sudden he fell sick and died. How can a little boy who seemed reasonably healthy all of a sudden pass away? The doctors diagnosed the little boy with a rare disease called systemic capillary leak syndrome (SCLS) or Clarkson’s disease. Hearing this story has made me want to learn more about this condition, its symptoms, and when a person needs to seek emergency care.
What is Systemic Capillary Leak Syndrome?
Systemic Capillary Leak Syndrome (SCLS) is a rare, life-threatening, and episodic medical condition that occurs when large amounts of plasma and proteins leak from capillaries into surrounding tissues, muscles, and body cavities. When fluid and proteins leak from the bloodstream into surrounding tissues, this could cause your blood pressure to drop rapidly, leading to organ failure and even death. Another name for SCLS is Clarkson’s disease. People with this condition can suffer from several attacks a year to a single occurrence in a lifetime. Episodes of SCLS are typically preceded by symptoms such as a fever, abdominal pain, and malaise.
How to Recognize Systemic Capillary Leak Syndrome?
While the cause of SCLS is unknown, there are several symptoms you must know in order to recognize whether someone is diagnosed with it. They do vary from person to person, and some experience more severe symptoms than others. Recurrent episodes in SCLS can range from weeks to years apart. There are also three stages to an SCLS episode: prodromal phase, leak or resuscitation phase, and post-leak phase or recruitment phase. Prodromal phase occurs a few days before the attack, leak or resuscitation phase occurs during the attack, and post-leak phase or recruitment phase occurs after the attack. However, let’s analyze the key symptoms you must know about this illness.
Sudden Low Blood Pressure
In SCLS, your blood pressure could all of a sudden fall rapidly. When your blood pressure drops, you start to feel fatigued, weak, and dizzy. This symptom is one of several to look out for during the prodromal phase. This sudden fall of your blood pressure occurs because of fluid leaks from smaller vessels called capillaries.
Sudden Swelling
Fluid moving into surrounding tissues can cause swelling. Swelling may develop rapidly during an episode. The swelling normally occurs in your legs and arms. This symptom normally occurs during the leak or resuscitation phase.
Muscle Pain or Aching
Another symptom to know is dealing with cases of muscle pain or aching. This normally occurs in the first phase of SCLS. Some people diagnosed with the condition cope with abdominal or muscle pain. Headaches are also pretty common for some diagnosed with this condition.

Rapid Changes in Body Weight
Besides body swelling, muscle pain, and sudden low blood pressure, you also could deal with serious changes in your weight, too. During the prodromal phase, sudden increases in body weight tend to happen to people. Within the post-leak phase, weight loss typically occurs.
When You Should Seek Emergency Medical Care
In addition to these four symptoms, some of the other signs of SCLS include irritability, fatigue or weakness, nausea, increased thirst, viral or upper respiratory tract infection, and diarrhea. Someone experiencing all of these symptoms must receive an urgent medical evaluation. SCLS episodic attacks can become dangerous quickly and require emergency care. Although it is a rare condition, SCLS is a serious condition that must be treated immediately. If you’re diagnosed with SCLS, you must follow your individualized emergency plan.
Have you ever heard of SCLS? Do you know anyone who is diagnosed with this condition? Feel free to share your thoughts in the comments section below. As always, be sure to like or share this post with a person you know coping with this illness.
