Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Systemic Capillary Leak Syndrome

What is Systemic Capillary Leak Syndrome?

Systemic Capillary Leak Syndrome (SCLS) is an exceedingly rare, life- and limb-threatening disorder characterized by acute and severe recurrent attacks featuring a rapid fall in blood pressure due to the temporary leak of plasma out of the blood circulatory system.

 

 

This virtual community is dedicated to the memory of Judith (Judy) Lynne Davis (1958-2009) (judithdavis3), one of its founding members and a victim of a very severe episode of SCLS that took her life in November 2009.

 

 

We also mourn the death of four other SCLS patient members of this community: Mario Gatto (mariogatto) from Naples, Italy, who passed away in December 2009; Denise Weston (mdweston) from Ohio, USA, who died in March 2011; Bruno Galien (bruno) from Nord-Pas-de-Calais, France, who passed on in February 2012; and Guy Allen Overland (allenoverland) from the Washington DC area, who died in January 2015.

 

Systemic Capillary Leak Syndrome (SCLS) is an exceedingly rare, life- and limb-threatening disorder characterized by acute and severe recurrent attacks featuring a rapid fall in blood pressure due to the temporary leak of plasma out of the blood circulatory system.

 

 

This virtual community is dedicated to the memory of Judith (Judy) Lynne Davis (1958-2009) (judithdavis3), one of its founding members and a victim of a very severe episode of SCLS that took her life in November 2009.

 

 

We also mourn the death of four other SCLS patient members of this community: Mario Gatto (mariogatto) from Naples, Italy, who passed away in December 2009; Denise Weston (mdweston) from Ohio, USA, who died in March 2011; Bruno Galien (bruno) from Nord-Pas-de-Calais, France, who passed on in February 2012; and Guy Allen Overland (allenoverland) from the Washington DC area, who died in January 2015.
200.0http://www.ncbi.nlm.nih.gov/pubmed/17575386?ordinalpos=8&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
Synonyms for Systemic Capillary Leak Syndrome has not been added yet.
Systemic Capillary Leak Syndrome (SCLS) is idiopathic, and thus at present there are no known causes. Probably a mid-life gene mutation takes place that renders those affected vulnerable -- possibly immune-deficient in some way -- to these curiously self-reversing capillary leaks.
Many patients report having a runny nose, flu-like symptoms, gastro-intestinal disorders, a general weakness or pain in their limbs, swelling in the face or hands and feet, or very cold hands and feet, but others get no particular or consistent warning signs.
Name Description
Swelling swelling
Myalgia Myalgia is muscle pain
Rhinorrhea Rhinorrhea is a runny nose
Dizziness Dizziness
Lightheadedness Lightheadedness
Hypotension Hypotension is abnormally low blood pressure
Hemoconcentration Hemoconcentration is the decrease of the fluid content of the blood, with increased concentration of formed elements
Hypoalbuminemia Hypoalbuminemia is low levels of protein in the blood
Nausea Nausea
Excessive thirst Excessive thirst
Generalized edema Generalized edema
Decline in clinical picture Clinical picture declines rapidly within hours
Cold limbs and sweating Cold limbs and sweating
Rapid swelling and compartment syndrome Rapid swelling of all limbs with development of compartment syndrome, especially during IV fluid administration
Decreased urine output Decreased urine output
Vomiting Vomiting
Intestinal cramps Cramps
Diarrhea Diarrhea
Fatigue Fatigue
Headache Headache
Systemic Capillary Leak Syndrome is diagnosed based on measurable symptoms and the presence of an unusual protein called a Monoclonal Gammopathy of Unknown Significance (MGUS) in most patients. Measurable symptoms for diagnosis are hypotension, hemoconcentration, hypoalbuminemia and the presence of the MGUS.
Diagnostic tests of Systemic Capillary Leak Syndrome has not been added yet
• Methylprednisolone 125 mg IV STAT, repeated as needed. • Judicious use of IVF boluses and drips to keep CVP above zero. • Phenylephrine or Norepinephrine for hypotension, early institution. • 50 ml of 25% albumin, repeated as needed. • Continuous CVP monitoring, stat and serial lab work including CPK and lactate. • Immediate Orthopedics consult and compartment pressure measurement; early, preventive limb fasciotomies if compartment pressures or CPK high. • Venous Doppler for DVT, may need full anticoagulation. Treatment of a fully developed SCLS episode requires recognition that there are two phases. The first phase, which often lasts a couple of days, is called *the resuscitation phase* because the dual aim of ER/ICU treatment is to stop or control the capillary leak *and* to raise the patient's blood pressure from near zero. In this initial phase, an albumin and fluid leak from the capillaries into the tissue spaces causes swelling, especially into the extremities rather than the abdomen or organs (such as the lungs). The blood pressure falls and the red cells concentrate. This loss of fluid has similar effects on the circulation as dehydration, slowing both the flow of oxygen carrying blood to tissues and the output of urine. Glucocorticoids (steroids like methylprednisolone) are recommended to reduce or stop the capillary leak, and albumin and colloids usually help to increase the remaining blood flow to vital organs like the kidneys. Keeping up with the fluid loss is important because sustained low blood pressure can damage vital organs such as the kidneys. Even though blood pressure readings may reach and remain at very low levels, it is important to avoid overly aggressive intravenous fluid administration causing massive swelling of the extremities. The goal of saline and vasopressors administered should *NOT* be to restore a "normal" blood pressure (or urine flow), but to maintain it at a minimal level sufficient to avoid permanent damage to vital organs. Measurement of central venous or arterial pressure in an ICU setting is often necessary to achieve this delicate balance. When too much fluid is administered, the result is excessive swelling, and the patient may well require surgical decompression of the limbs. In this procedure, known as a fasciotomy, the skin of the arms and/or legs is incised to release the compressive pressure the retained fluid is having on blood flow to and from the extremities. The second phase of the treatment is known as *the recruitment phase*, when fluids and albumin are reabsorbed from the tissues during at least a couple of days. In this phase, the capillary leak has ended and the main threat is fluid overload. If intravenous fluids were given in excess, they usually cause an accumulation of fluid in the lungs and around other vital organs. *Most of the patient deaths happen during this recruitment phase* so it is important that diuretics be administered to help patients discharge all the fluid previously given -- and to keep them from backing up, especially into the lungs. As concerns episode prevention, two approaches have been tried: β2-agonists like theophylline and terbutaline, and a prophylaxis with IVIG infusions. In recent years, more and more patients have been migrated from the former to the latter in Canada, Europe, and the United States, because IVIG therapy apparently leads to superior results -- no episodes or fewer and lighter episodes than compared to no therapy or the other therapies -- and does not have as many adverse side effects as does treatment with β2-agonists like theophylline and terbutaline. For further details on the use of IVIG, see the following insert and discussion of Prognosis.
The prognosis is uncertain and depends on (a) how well episodes are managed, in terms of preventing permanent damage to vital organs and extremities; and (b) the ability to prevent episodes altogether. There are two main treatments to prevent episodes of SCLS. The first can be called _the Mayo Clinic’s approach_ of a preventive therapy with theophylline (or aminophylline) and terbutaline tablets taken on a daily basis. However, these medications, meant to reduce endothelial hyperpermeability, have very unpleasant side effects, and often prove ineffective, providing partial and transient improvement. The second can be called the _French preventive regimen,_ which involves monthly infusions of immunoglobulins (IVIG). There is growing evidence that IVIG (usually, 2 gr/kg per month, administered over two consecutive days) has worked for many patients in Europe for over 7 years now, and is proving mostly successful among patients who have tried it in North America in the past several years, suggesting that SCLS may be caused by some kind of acquired immunological deficiency.
Name Description
Medical help Find yourself a compassionate physician, preferably a specialist in internal medicine or hematology affiliated with a major university hospital, willing to do his/her homework on this rare disorder (namely, read the literature and follow the instructions), and willing to consult with the few SCLS experts available: *in the United States*, Dr. Mark S. Pecker, Professor of Clinical Medicine; Weill Cornell Medical College, New York, NY, tel. 646-962-2605, email _mpecker@med.cornell.edu_ ; *in Europe*, Prof. Zahir Amoura, Département de Médecine Interne, Hôpital de la Pitié-Salpêtrière, Bd. de l'Hôpital 83, Paris 13e, tél. 0033 1 42 17 80 81, email : zahir.amoura@psl.aphp.fr
Clinical Study Volunteer Patients who have been diagnosed as having SCLS and who are at least 16 years old are wanted for participation in the only scientific study of the illness taking place anywhere in the world: at the National Institutes of Health in Bethesda, MD, right outside Washington DC. You must have a documented medical history including at least one acute episode of SCLS or else continuous symptoms of periodic hemoconcentration, hypotension and protein leakage. Have your primary doctor contact Ms. Lauren Long at _longl@mail.nih.gov_, before sending in the requisite letter of referral with your medical history and laboratory studies to the lead clinical investigator, Dr. Kirk Druey, _kdruey@niaid.nih.gov_, tel. 301-435-8875. Once accepted into the clinical research study, you will be invited to come to NIH and spend about 4 days there for the purpose of being examined, donating blood, and being subjected to various tests (e.g., clinical digital photography of your blood vessels). Depending on circumstances, you probably will have time off to do sightseeing in the capital area during your stay at NIH. Those who wish to be greeted in person during their stay by this community's Expert, please contact _aporzeca@american.edu_
References of Systemic Capillary Leak Syndrome has not been added yet.
Someone else has to be like me!! Help Created by Beverley
Last updated 25 Feb 2017, 02:02 PM

Posted by Beverley
25 Feb 2017, 02:02 PM

I have been told i seem to have capillary leak syndrome but with a twist that my blood pressure plays yoyo, and i keep fluid well after the flareup (dont know what to call it. I had to have a pericardial window put in to stop fluid squashing my heart and my lungs fill with fluid so often i feel like a kettle. I am on diuretics everyday and just started Theophylline and montelukast. Is there anyone like me here??? I also seem to have a lupus type syndrom, or is that a combination of symptoms of this?

Confused Anemia/Now Iron Toxicity Created by kimberoumayah
Last updated 15 Feb 2017, 08:37 AM

Posted by Jcarson
15 Feb 2017, 08:37 AM

Hi Kimberley This is by no means a definitive answer. Consider however that the capillary leak occurs in diverse organs for no known reason. Many experience peripheral muscle oedema causing swelling, arterial occlusion and progressive muscle death. My leak occurs into my lungs. Others suggest pericardial or brain leaks. Perhaps yours is into the liver. Now the lived is encased in a tight fibrous membrane and any internal swelling will cause arterial compromise to the liver cells, hence raising enzymes. It is important to realise that a raise in enzymes represent damage, but not death, of liver cells. The symptom you would get is liver pain. This may or may not explain what is happening with yourself. John

Posted by kimberoumayah
14 Feb 2017, 06:51 PM

Hi everyone I am still at a loss... Well my liver scan was unremarkable? My doctors can't seem to figure out why my iron saturation and liver enzymes are unusually high during periods of capillary leak. When the capillary leak is over both of the other conditions seem to resolve. Does anyone else experience elevated iron levels during an episode of capillary leak? I could really use any form of advice or personal experience going forward. Thank you Kimberly

Posted by kimberoumayah
30 Jan 2017, 11:24 PM

Thank you John! Yes I am on IVIG every two weeks. Yes you are exactly correct about the liver and iron. That was the first thing that my GI said when I saw him in December. He called me at 9:30 pm on a Friday and scheduled me for an appointment on Monday morning. He ran every imaginable test. Celiacs, Genetics, CBC/w Diff, CMP and a bunch of other tests that I have never seen in my chart before. I still haven't figured out what he is trying to find and if my capillary leak causes iron toxicity? I had three blood tests in December all showed capillary leak and iron toxicity with elevated AST ALP and one other liver enzyme. January 16 I had more blood tests and Thursday the GI called at 7:00 am with instructions for tests I was to receive on Friday. Well I am sure that eventually I will find out (: Thanks for your help Kimberly

View Full Thread (2 more posts)
new member anyone else in UK Created by rareshare5050
Last updated 22 Jan 2017, 11:22 AM

Posted by rareshare5050
22 Jan 2017, 11:22 AM

Thanks for your reply.....I am due to see diabetic nurse later this week..... thanks again

Posted by mpar745
21 Jan 2017, 12:51 PM

I have had taken metiformin for many years for my PCOS and had no trouble with it. I have only had one treatment of IVIG so far but the metiformin was fine with the IVIG. I would check with your doctors, read up on drug interactions. But for me personally I did not encounter any problems with metiformin and it really helped with my insulin resistance.

Posted by rareshare5050
17 Jan 2017, 06:55 PM

I have been diagnosed for 4 years and since having IVIG and other meds I have not had an episode.....all seems to be going well for me at the moment although my consultant says we are in unknown territory, and I have recently been diagnosed with diabetes type 2 and not really keen to take metformin due to side effects....does anyone else out there take this drug??? as things are going well for me now I don't really want to rock the boat any advice would be great to hear...

new member anyone else in UK Created by rareshare5050
Last updated 25 Feb 2017, 01:53 PM

Posted by Beverley
25 Feb 2017, 01:53 PM

Hello, My consuultants say i  seem to have this syndrome with a difference, I seem to keep a lot of the fluid after the ordeal/flare up...don't even know what to call it! Also my bloodpressure plays a game of up down, not like the drop and stay there many of you must experience. Does anyone else experience this? How are you treated? I seem to be the only person my consultants have come across with this condition. (well my version of it). I would really appreciate any feedback, anyone like me or anything really. 

Posted by stedrick
30 Jan 2017, 03:24 PM

Though it may sound odd, my endocrinologist has recommended a small portion of sugar-free gelatin prior to each of six very small meals per day. Though originally skeptical, it has made a big difference in keeping my hypoglycemic roller coaster a smoother ride. Susan

Posted by rareshare5050
28 Jan 2017, 10:34 AM

thanks for your post and I will try your suggestion of reducing carbs and fat so hopefully wont have to take any kind of medication..... I'm hoping that exercise and diet will be able to control the diabetes....but as I find exercise difficult we will see....im going to try swimming and see how I get on thanks again and any other suggestions would be greatly appreciated

View Full Thread (2 more posts)
No more IVIG Created by Gwendolyn20
Last updated 11 Jan 2017, 07:28 AM

Posted by Jcarson
11 Jan 2017, 07:28 AM

Thankyou for sharing this. It is the sort of information we are trying to collect in the IVIG survey. Please go to www.capillaryleak.com. The password is alaska. It is urgent that we record these events, especially if there is a recurrence. What is most important is whether IVIG is, over time, able to effect a 'cure'

Posted by kgoldade
10 Jan 2017, 07:05 PM

Hello, My grandson Levi was diagnosed in March 2015 at age 2 and a half , as far as we know, the youngest person to have this terrible disease. He also had a fasciotomy at that time. He started having IVIG every month for about a year and then went to every 2 months and now is receiving a treatment every 3 months ( 2 so far ) . So far so good with no headaches or joint pain, so we are unaware of typical or specific symptoms from reducing treatments that dramatically and since he is not completely off not sure how much this helps except for others to know there is a very young patient who is/has drastically reduced treatments with no real side effects or withdrawals. Not sure if we will be able to completely stop but the trend is encouraging that that may be possible in the future.

Posted by Gwendolyn20
10 Jan 2017, 06:45 PM

Hi my friend was diagnosed with SCLS 2 years ago when he suffered from an episode and required a fasciotomy on both his legs. He was then put on IVIG every 4 weeks and went on every 6 weeks for about 6 months with Dr.Druey approval. He has now decided to stop the treatment completely and didn't have his last IVIG infusion it's been a week since, he's aware of the risk with stopping the infusions. Hes had moderate headaches and some pain in his legs and joints. His physicians are going to monitor him every 4 weeks to see his progress without the IVIG in his system. I would like to know if anyone else has gone thru this and maybe have any advice in how to help him go thru it. Is there any specific symptoms from having withdrawls from the IVIG what's normal and what's not ?

Organ Damage Likely Secondary to SCLS & Related Steroids? Created by stedrick
Last updated 9 Jan 2017, 12:02 PM

Posted by stedrick
9 Jan 2017, 12:02 PM

Thank you, John. It is, indeed, a tightrope. My adrenals are very slowly rousing, but the need to stay out of metabolic syndrome is also important and tricky. A physical and intellectual challenge. I would prefer the New York Times Sunday crossword puzzle. :)

Posted by Jcarson
9 Jan 2017, 04:59 AM

Just an observation. An adult's body normally produces about 4mg equivalent of cortisone per day, all things being equal. So many people whose adrenals have been suppressed cannot go below this level. Equally, 4mg of prednisolone orally per day 'should' have little adverse effect. The adverse effects of higher doses include suppression of the immune system, ( which is why it is used for auto immune disorders), effects of glucose, protein, and fat metabolism, hence the high blood sugars and A1c levels, and salt/potassium/electrolyte handling by the kidney, often causing oedema. The mixed effects of steroids also decrease vascular permeability, thus helping attacks of SCLS. Gradually tapering doses of steroids are well used in polymyalgia rheumatica, a condition marked by severe body pains and fatigue, and whose hallmark is a high sed rate. If the dose is tapered too fast, the myalgia may return with a vengeance. The bottom line is that steroids can be life saving, but also very difficult.

Posted by Windows
9 Jan 2017, 03:34 AM

Thanks. yes that is what happens to me.

View Full Thread (9 more posts)
28 y/o recently diagnosed Created by ValeriaSpain
Last updated 2 Jan 2017, 05:21 PM

Posted by ValeriaSpain
2 Jan 2017, 07:09 AM

Hi Arturo! Thank you very much! I live in Barcelona city, hence I greatly appreciate the information about doctors who have treated this condition. My internal medicine expert, Miquel Vilardell, he is a professor and also chief of IM in two renowned hospitals here in Barcelona, has programmed the analysis to comfirm and prove I have SCLS, May you please advise which are the main tests to be completed this way I am able to compare with everything he requested in the labs? I am having those tests done on Jan 10th. By the other hand, he saw my analysis when I was in the hospital and the generalized and cyclic edema and my constant cold hands are the symptoms I have now along with a severe hormonal disorder caused by secondary hiperaldosteronism and high renin, which was caused by the severe hipovolemia. The renin/aldosterone ratio is normal. I also experience tingling in my back, feet and hands, and also amenorrhea. I am not able to sweat anymore either. I am currently taking 150mg of spironolactone daily, in order to control the aldosterone effects hence the generalized edema as well. Did you have hiperaldosteronism? I had 2.2 albumin in the hospital and the ESR was 40, the CRP was 30. I had low pressure as well which returned to normal right after the attack. I had a couple of mild attacks in which my pressure was not as low as in the first, the strongest attack. It started with sinusitis and liquid diarrhea, a whole day with fever, which stopped in the worst couple of days in which the albumin got so low. I have been feeling extremely weak since the attack, which impedes me to work out in the gym or run. 8 months earlier, I had an herpetic queratitis in my right cornea back in April for which I am taking 800mg of acyclovir for a year until April 2017,. I was treated in Bascom Palmer Eye Institute. I did not have anasarca or fluid in my lungs or heart. My kidneys are fine and liver as well. On Jan 9th I am scheduled for a kidney doppler ecography to see the veins. My BNP rised to 643 in the hospital - being 300 the max normal- and a d-dimer indicative was also high with negative result at a CT scan, my heart is in good condition as well. I do appreciate to receive the info you mentioned in my email: manfredivaleria@gmail.com Thank you so much! I will wait to have all the results by Jan 19th in order to contact the doctor you mentioned. Sincerely, Valeria

Posted by aporzeca
2 Jan 2017, 01:51 AM

Welcome to our community, Valeria! My advice to you is as follows. *First*, you should have your SCLS diagnosis confirmed by an expert, and the best way to go about doing that is to have your treating physician send in ASAP a copy of your medical records to Dr. Kirk Druey at NIH (see contact information at the bottom of the tab “Disorder Details”) requesting an expert evaluation. *And second*, if and when your diagnosis of SCLS is confirmed, then Dr. Druey will work with your physician on a treatment plan which may well include an IVIG-based therapy. You can read all about it in the various sections of our website. Fortunately, there is some knowledge about SCLS in Spain's medical community. Physicians from Barcelona, Bilbao, Córdoba, Coruña and Valladolid have published case reports on SCLS in recent years, so let us know where you are living in case one of them can see you. And if you'd like to read these reports in order to have the names of doctors and hospitals that have seen cases of SCLS before, or to give them to your physician, send me an email at _aporzeca@american.edu_ and I will email them to you. We also have a couple of community members who are in Spain, and they may be able to help you. *Please do not delay:* if you really have SCLS, then it’s only a question of when, not if, you will experience your next episode — and it could be fatal. Arturo

Posted by ValeriaSpain
1 Jan 2017, 07:43 PM

Hello everyone, I am Valeria and I'm from Spain. I was living in Miami for work until a month ago when I had several attacks and no Doctor was able to diagnose my condition. An endochrinologist I saw suggested I had SCLS and seeing the lack of interest of my PCP and doctors I saw every time I went to the ER, I decided to return home where I have been diagnosed with SCLS. I will not be able to return due to my work visa but I am positive I will be able to start treatment once the more detailed analysis are taken next week. May I please ask the treatment you are currently receiving please? I am willing to visit hospitals with the most SCLS cases treated. Thank you and I wish All a year free of attacks! Sincerely, Valeria.

Circulation problems Created by skadi1
Last updated 29 Nov 2016, 07:33 AM

Posted by Jcarson
29 Nov 2016, 07:33 AM

Hello Katarina You can get me on john.m.carson@bigpond.com

Posted by skadi1
29 Nov 2016, 06:27 AM

Thanks John , I have tried asking many Drs at 2 Hospitals but no one seems to be very interested in finding the cause or how to manage the symptoms. I was hoping someone may have the same problem as this all started after many serious attacks .I was switched to privigen earlier this year and my body is still getting use to it .I am at a loss and it is making life a bit difficult and I am afraid of it getting worse.

Posted by Jcarson
29 Nov 2016, 05:53 AM

Hi Katarina, Whooah! What you describe can have so many causes, some of them associated with the condition, some could be associated with treatment, and most are totally unassociated. Out of interest in Australia, IVIG is approved for use in forms of peripheral neuropathy as a treatment. You really need to sort this through with your physicians. John

View Full Thread (1 more posts)
World map Created by Ritz
Last updated 9 Nov 2016, 10:06 PM

Posted by Ritz
9 Nov 2016, 10:03 PM

we can mark where we live using this link: "WorldMap":http://mapmaker.nationalgeographic.org/efNqIxEuLgyIqf7kOJDYHr/?edit=bumLdKAyNLgf7iX3UiVFkk I thought it might help us see who is close by.

In limbo Created by Rubeanie
Last updated 10 Dec 2016, 12:50 AM

Posted by Rubeanie
10 Dec 2016, 12:50 AM

No, I am sorry I did not see that post Mntnhiker. It sure makes you wonder, doesn't it. I am still episode free, but I am just waiting and wondering when the next one will hit. I find it very hard to plan anything...trips etc.

Posted by Mntnhiker
10 Dec 2016, 12:36 AM

Did you see my original post? I had Rocky Mountain Spotted Fever.

Posted by Rubeanie
28 Nov 2016, 03:13 PM

I am living in Montana. My insurance also took a major hit but they have covered everything so far. I have read many of your posts and wish you nothing but the best. Thankfully I have not had an episode since August when I was put on monalukast.

View Full Thread (2 more posts)
Community Resources
Title Description Link Date Added

Community Leaders

aporzeca

I had my first episode of what turned out to be SCLS in November 2005, and was very lucky to have survived it (though with permanent disabilities in arms and legs, and thus in hands and feet) and to have been diagnosed correctly within days.

 

 

I went on to have 2 other life- and limb-threatening episodes in April 2007 and March 2009, requiring 2+ weeks of Intensive Care hospitalization to keep my organs alive and emergency fasciotomies to preserve the muscles and nerves I still have in my extremities.

 

 

I also had 7 episodes of lesser severity (Dec. 2007, June 2008, June 2009, July 2009, September 2009, and two in November 2009), because I realized I was having them early on, which allowed me to get a massive dose of steroids (Prednisone pills and/or injections of Solu-Medrol and Albumin) that effectively stopped the capillary leak phase of SCLS.

 

 

Given the increased frequency of my episodes of SCLS, despite having taken the recommended doses of the traditional medications (e.g., Theophylline, Terbutaline and Singulair), I was given my first infusion of IVIG in November 2009 and have had monthly infusions since then with no adverse side effects whatsoever. So far, so very good: I have had no more episodes of SCLS.

 

 

While I was among the first SCLS patients in the United States to benefit from an IVIG therapy, most other patients who had previously been getting this medication in Europe, and virtually all patients around the world who have since received IVIG, have stopped having episodes of SCLS.

 

 

Our stories are now told in a number of case studies published in various medical journals, and there is also a scientific article showing the efficacy of IVIG in countering SCLS in laboratory conditions based on our blood samples before and after receiving IVIG, as well as another article with the results of a survey of SCLS patients who have been on IVIG.

 

 

My address is aporzeca@american.edu

Community User List

Suspected capillary leak syndrome. Primary immune deficiency/IGG-1
I have been diagnosed with this disease for the last 4 years, and although all at present is going well I would like to be able to talk to others who have this. <p>&nbsp;</p>I live in the Uk and wo...
Dott.ssa Pollet Cristina-Internal medicine doctor-that work in an Day service Internal Medicine Ward in S. Giovannni Battista Hospital of Turin, North-west Italy
student
Hello my name is Andrea, I am 45 years old and from Germany. I recieved the diagnoses of Capillary leak Syndrome in march 2016.
? Clarksons
I have been recently diagnosed with systemic capillary leak syndrome. My first "episode" put me in the ICU for 3 days. Since then I have been hospitalized twice and several smaller episodes. I ha...
Developed Systemic Capillary Leak Symdrome this past Winter when I had the flu. I have been quite ill past 4 years with Mast Cell Disease. The SCLS has now shifted from a chronic form to an acute f...
*33 year old, struggling with suspected SCLS since August 2015. Attacks mild to moderate rather than severe, but occur every week or so. Previously very active person with reasonably good health e...
Having had cyclically hospitalising attacks over the last 5 years I have finally been diagnosed with clarksons as all other test are negative . Like all of you I'm sure have had extensive tests and...
I am here because a relative of mine was recently diagnosed with SCLS. Am locating resources for him.
Diagnosed in the year 2000 at Mayo Clinic (Minn). I live in Florida and am followed by doctors who know very little about capillary leak, I do travel to Mayo occasionally in hopes of updates with l...
I am married to Cristiano, my husband is diagnosed with SCLS february 2016. We live in Denmark with our 2 children (6 and 3 years old). <p>&nbsp;</p>• First episode: <p>&nbsp;</p>October 4, 2014. ...
Mother of a daughter diagnosed with FMF and SCLS
Born 1974, live in Germany near Stuttgart, married, have two young Kids, work for PORSCHE, cannot drive because of damaged legs (fasciotomy) and feet, fine motor skills of my hands are bad (critica...
I am a volunteer podcast organizer for RareShare.
I have just been diagnosed with SCLS. I am 23. Attending college at Florida state college at Jacksonville. Been sick for about six months, almost died a few times. Glad my hematologist figured it o...
I am 42,married to Ruth and have 3 monsters living in my house called Sofia,Luke and Daniel. My wife tells me we have to care for these monsters until they become human. <p>&nbsp;</p>Keen sports fa...
May have had Clarkson's Disease for 2 and 1/2 years. Have almost certainly had it since October 2015. Am being treated by Dr. Druey and by the medical faculty at the University of Florida. I have h...
I'm 33 years old.Im from Tehran/Iran but lately moved to Dubai/UAE <p>&nbsp;</p>But I due to my condition I go back and forth. <p>&nbsp;</p>3 years ago I had a rough time in my life a year full of...
recently diagnosed with SCLS and feeling a little lost..
ASDASDASD ASDSDA
65 yo male, diagnosed in Jan 15 after weekly bouts of hypotension, hemoconcentration, hypoalbuminemia,edema, severe abdominal pain. 1st episode was Oct 2014 with massive edema, cardiac arrest, mult...
Hello, <p>&nbsp;</p> <p>&nbsp;</p>I am a 54 year old female and live in Sydney, Australia. <p>&nbsp;</p> <p>&nbsp;</p>I am suffering from a proposed mild but very chronic version of Capillary Leak ...
Daughter has SCLS
Female Age 48 - very fit and healthy previously . Experienced first episode Sept 2014 and been having repeat attacks on average 1 per month ( but nor clearly linked to hormonal cycles) since then. ...
My daughter-in-law has recently been diagnosed with this disease. I want to find out as much as I can in order to understand what the disease does to her, and what I can do to help her
hard worker
My name is Marlies and I´m living in Potsdam, Germany. I experienced a very critical episode of SCLS in March 2015. Although I have permanent disabilities in my lower legs I was lucky enough to su...
Donnie had his first episode in Jan '08. He was in Columbus GA. He was admitted released and aemitted again over a 10 day period. He gained 30lbs and was treated for rhabdomyolysis. He had his seco...
My son Levi is 2 1/2 and we are pretty sure he has SCLS.
Je suis atteinte de lupus érythémateux dissiminé depuis l'âge de 11 ans. Depuis 10 ans, j'ai développé du psoriasis et le symdrome d'hyperperméabilité capillaire.
Diagnosed at 11 years old. <p>&nbsp;</p>first attack at 8 years of age. It took us three years to get a diagnosis. Has been on IVIG since February 2015 and is doing very well, no attacks since Jul...
My Brother Guy Allen Overland has been diagnosed with Capillary leak syndrome since 2003
Hello <p>&nbsp;</p>I need treatment-informations for one of my famaly-members <p>&nbsp;</p>in france, <p>&nbsp;</p>who has the "Systemic Capillary Leak Syndrome" <p>&nbsp;</p>i didn´t find the hom...
Diagnostic since 16/12/2014
My wife was diagnosed with SCLS Oct. 2014. That was her third attack with severe cerebral involvement (brainstem, hippocampus, thalamus) <p>&nbsp;</p> <p>&nbsp;</p>2009 is when she had her first ep...
I had a diagnosis two months ago (October 2014) for seems a mild and chronic form of SCLS. By remembering what happened since January 2014, I realized that I was probably ill as soon as February, b...
Hi my name is Enny. My daughter is 5 and was loosely diagnosed with SCLS earlier this year when she was still 4. This month will mark one year since my daughter fell sick and ended up in trauma roo...
32 year old mother of two from Rowlett, TX. Diagnosed in September 2014, a year after onset of symptoms. Looking for solid advice and info on doctors in the Dallas area with any knowledge of this d...
I'm currently casting a medical mystery docu-series for the Discovery network.
I was diagnosed with SCLS Jan. 2014. July of 2013 is when I had my first episode. I had flu like symptoms and excruciating pain in my right lower back area. I couldn't straighten out my leg cause ...
Previously fit (extremely) GP. I fell ill with my first attack on the day I retired, in July 2014. I am not sure how I survived the first attack with an Hct of 219, sudden drop in renal function...
I have recently been diagnosed with Clarksons Syndrome also known as Ideopathic Systemic Capilliary Leakage Syndrome. <p>&nbsp;</p>I would like to join your community to find out more about it and...
I'm a young doctor who's studying idiopathic systemic capillary leak syndrome, or Clarkson's disease. <p>&nbsp;</p>I work in Milan, at L.Sacco Hospital, with prof. M. Cicardi. We're conducting medi...
Medically retired hospital executive diagnosed with Clarkson's Disease, pituitary disease, secondary adrenal insufficiency and autonomic dysfunction.
I'm one of the social media interns for RareShare. I help raise awareness for rare diseases and rare disease support groups
My friends husband has Systemic Capillary leak Syndrome
Hi- have scleroderma, polycythemia, dermatomyositis, allergic angioedam and hashimotos thyroid. Am still working and enjoy my work. Life is hard and would like to be a member of some groups where...
I am in fourties & survived an attack of SCLS this year in Feb. I suffered compartment syndromes with its complications requiring fasciatomies. I am now going through rehab, getting monthly IVIG & ...
49 Year Old Male. <p>&nbsp;</p>Living Sydney Australia <p>&nbsp;</p>Diagnosed with SCLS April 2014
I have Clarkson disease and struggle everyday. I have total body edema along with joint pain. Also suffer from flu like symptoms. I have been treated in Rochester Mn at the Mayo Clinic. I started T...
I live near Annapolis, Maryland. I was diagnosed with SCLS in March of 2014. That was my 3rd attack in 15 months, survived the other two on my own pretty well, but didn't know what was going on. We...
My daughter was first diagnosed with Capillary Leak Syndrome in 2006. However, she had other symptoms that didn't fit the condition, so after nearly 2 weeks in ICU, she was discharged with primary ...
hi
I am new to the community. I just received my diagnosis a couple of weeks ago. My head is still spinning and I am trying to read everything I can get my hands on. I have been prescribed waist hi...
My name is Christine Maynard. I am a 55 year old woman living in my hometown of Natchitoches, LA. I have three grown sons and three grandsons in Austin and Cali. I want to regain my wellness and ...
friend of a person with scls
Pathologist
I am a capillary leak patient and have never had the opportunity to speak with anyone else who deals with the problem. I would like to connect with others willing to share their experiences. I must...
I am the mother of a wonderful 8 year old girl .She has systemic capillary leak syndrome. 3 severe episodes requiring hospitalization. Being treated with sub Q igg therapy. Hoping to connect with o...
Our son Connor has had three acute episodes from March 2009 to Nov. 2011 between the ages of 4 and 6 1/2. He hasn't had one since. <p>&nbsp;</p> <p>&nbsp;</p>My wife, Jen, is also a member of the s...
For years I have been looking for answers to my medical issues. The closest diagnosis that my drs and I have come up with is SCLS/Clarksons. After looking into hereditary angioedema. I am still str...
A caring friend of someone I've known for over 30 years. I'm trying to learn what I can to understand their situation better and hopefully help as I'm deeply shaken by this all.
My 8 year old son has just been diagnosed with Systematic Capillary Leak Syndrome. We live in Sydney Australia, I am scared to death of this disease, but it does help to read how everybody copes w...
SCLS diagnosed 2008 Jul
hello, <p>&nbsp;</p>I am a french woman who suffers capillary leak syndrome. <p>&nbsp;</p>Doctors diagnosed two weeks ago . <p>&nbsp;</p>I would like to discuss with you because there is no forum...
I live in India ( Rajasthan) with my father and mother. My father is a retired officer , 64 yrs of age.He had always been healthy and with no ailments. Yet last year in April he suffered from Se...
To Come
my brother in law is suffering frm the ailment hence would like to join the community
Hi I am relative of Mr. Rahul Bali who is a Patient and is presenlty in ICU
I am a close Relative of Mr. Rahul Bali Who is Suffering from This rare disease
Parent of a young man with Clarkson's.
My boyfriend and I have a total of three children, his daughter has just been diagnosed with SCLS. Well, maybe not diagnosed, but that is what NIH has decided she probably has after lots of testing...
I research symptoms that my husband suffers and read about possibilities that I can then take back to the doctors. Latest is systematic capillary leak syndrome. He has been told repeatedly that the...
44 y.o. single parent - developed scls 8 months post op status post mesh placement 2/2010 - systemic shock severe issues began 10/2010 - mesh removed 11/2011 - immune system damage containment/rev...
Just in the centre of the Netherlands I live. We have 4 boys. <p>&nbsp;</p>Until my 50th I seemed to be healthy. I had a very busy and inspiring job as general practitioner. I loved all kind of spo...
Hi <p>&nbsp;</p> My name is Kimberly. I live in Michigan. I am a wife and a mother. I was diagnosed with SCLS in January of 2012 at the age of 42. <p>&nbsp;</p>My journey may be similar...
My mother died in 1992 from SCLS . I am curious about new developments in treatment of this illness, and if there have been any causal factors that might have been identified. <p>&nbsp;</p>We hav...
A first episodi occurred on October 25, 2005 and was the entry in the U.V.I of the Hospital Universitario Rio Hortega in Valladolid (spain) where i remained in a coma induced to stabilize me. <p>&n...
I am 53 living in Paris , France.I discovered in May 12 I had the SCLS and my doctor is Pr Amoura at Hopital Pitié Salpétrière in Paris . <p>&nbsp;</p>Before that my first "crisis" started in summ...
I am a retired high school principal.
I am the mother of scls patient, Marilyn Meaux, or maire602
I am a christian mother of two beautiful little girls. I am very loving and have a gentle and kind heart.
Hi Everyone, <p>&nbsp;</p>After just returning from 4 days in the hospital (my 5th episode) in So. CA while visiting my daughter & her family, I have decided it's time to get serious about finding ...
My mom suffers from SCLS and I'm working hard to help her find the best treatment possible to prevent her from having any further episodes. I appreciate this community and am excited to learn from...
My friend has been diagnosed with capillary leak.
Father of a patient.
My little brother (34 years old) has been gone through two SCLS crisis in last two years (Feb and oct 2012). He is now taking IVIG once a month and it´s been a while with no other hospitalization...
..
Diagnosed at University Hospital, London, Ontario, Canada by Immunologist (now retired) over 20 years ago, still alive, and have an episode on avg 1/yr. Interested in treatments, experiences, etc
Sister -in- law of SCLS victim who passed on Feb. 19, 2011. We would like to spread more awareness about this disease.
I am the proud mom of two beautiful children. Last year my world felt like it was crumbling around me when my 4 year old son was diagnosed with Capillary Leak Syndrome on his 2nd admission to hospi...
40 year old, mother of four, diagnosed on Dec. 8, 2011 with SCLS. Hospitalized in ICU for 5 days, 4 of which were spent in an induced coma, intubated. Fasciotomies were done on all four extremities...
I am a 40 yr old sahm to identical twin boys. I was diagnosed with Capillary leaking syndrome 5 years ago after many unexplained "attacks" of what the doctors thought was me going septic and acute...
Husband & advocate of Marilyn SCLS patient 1/2008 6wks LCMH, ER, ICU, floor, physical rehab. 11/2008 mild case,12/2008 4wks ST. Lukes Episcopal Houston Texas, 1/2009 Mayou Clinic Rochester, Minneso...
47 Years old <p>&nbsp;</p>Male <p>&nbsp;</p>Living near London in the UK <p>&nbsp;</p>Married with 3 children (all boys) <p>&nbsp;</p>I was a research Biochemist for 12 years and am now a teacher a...
My 4 year old nephew was recently diagnosed with SCLS. He has had four episodes in the past 12 months - one in January 2011, one in March 2011, one in June 2011 and one in Dec 2011. Each episode ...
Bonjour, <p>&nbsp;</p>J'ai un problème lymphatique depuis la puberté (1950). Hyperperméabilité capillaire de 20% avec oedème généralisé. Le Pr Lagrue (Mondor-Créteil) a diagnostiqué un oedème cycli...
*scls <p>&nbsp;</p>Have had CLS for 4 Years first time was in I C U for 11 days my Doctors did not know what was wrong . <p>&nbsp;</p>My blood pressure and count dropped. So they said I was in dehy...
My first episode was in 2008. I was misdiagnosed with anaphylaxsis up until fall 2011. I started IVIG treatment in February 2012. Since then, I have had no episodes. <p>&nbsp;</p>May 2013- Tr...
My daughter Ela (3 this November 2011) was diagnosed with SCLS, September 2011, after her last serious attack. <p>&nbsp;</p> <p>&nbsp;</p>Ela has had 4 episodes in the past year (September 2010 to ...
I was told that I have chronic capillary leak but that I do not fit into the strict category of SCLS because I do not have an episode resulting in an ICU stay or proven hemoconcentration. I am stil...
One of my best friends is suffering with this disorder, and I wanted to find out more about it.
In early July, 2010 (the hottest weekend of the summer) I arrived at the emergency room with a low pulse, rapid heart rate and profuse sweating. When they checked my blood, they saw what they thoug...
My name is Amy and I have been just informed I have Clarkson's Disesase. I am a mother of 3 and grandmother of 5. I have been battle with this for over 21 years and finally came across a doctor a...
*I was diagnosed on June 24, 2011 by Dr. Griepp. My story: In Feb. 2011 I was having swelling first in my hands and then spread to my feet and legs. Went to my Primary doctor. She ran some test for...
I had my first acute attack of CLS around 10 years ago and again 3 years ago. My most recent attack was around two months ago and it was very severe. This last time I was diagnosed with CLS. The at...
I have been diagnosed since April 2011 <p>&nbsp;</p>I was a puzzling case 3yrs ago due to showing similar symptoms to MS all test came back negative, <p>&nbsp;</p> I was discharged after two weeks ...
friend of someone who died from scls
I am a family member of Mary Jane K, hoping to get more information on this disease.
I was diagnosed in 1998 with SCLS. I had been ill for 6 months, and gained 80 lbs. I was given prednisone too prevent an allergic reaction to a test. It worked wonders, and I lost the fluid. I ...
i was diagnosed with scls in November 2005 or actually 3 months later in February 2006. After I had emergency open heart surgery to put a window in my heart sack at age 38. In a coma for nearly t...
I am at retirement age and have suffered from an auto-immune disease for the past 15 years.
My sister Shannon suffers from SCLS; diagnosed 5 years ago (2006). <p>&nbsp;</p> <p>&nbsp;</p>Shannon has just been admited into Cardiac Care to monitor her current episode. We have been fortuna...
I am a 61 year old female. I started swelling when I was 14 years old - just a week after my father's sudden and unexpected death. After his funeral, we went to visit family that could not attend...
Previously healthy individual - jogger and active in excercising. First episode 9/24/10. Thought I had the flu. Extremely dizzy, nauseated. Doctor came over and couldn't find pulse. Put on 30 l...
wife has capillary leak syndrome
Sept 4, 2010 - Persistant Flu-like symptoms for several days led me first to my doctor's office and then to the Emergency Room ICU. I was admitted with extremely low blood pressure. I dropped into...
I am a retired family physician with MGUS and have had progressive symptoms of recurring edema, low blood pressure, near syncope that may be a chronic variant of SCLS.
I was diagnosed with SCLS in December of 2010 after suffering multiple episodes for over a two year period. <p>&nbsp;</p> <p>&nbsp;</p>I was initially put on Theophylline and Prednisone with one mi...
I am the husband of someone with (?) SCLS and/or angioedema
my 4 yr old son was dagnosed with capillary leak syndrome. he has had 3 episodes in the last 6 months and thie last episode led to a cardiac arrest. he was put on life support and luckily recovered
Physician brother of a member
I'm 19 years old, living in Oklahoma. I'm in my second year of college, and am double-majoring in Forensic Science and Funeral Service. I enjoy playing the piano , guitar, and singing; going to con...
As new member but with diagnose of SCLS in April 1988 after a severe collapse and a first hospitalization in distress and 3 more other until January 1989, I think I will, probably, be at time the “...
My first attack was 3/2000. RAK amputation, nerve damage in both hands & left foot. In hospital for 4 months. <p>&nbsp;</p>Second attack 4/2005. Was in hospital for a week, but thankfully no phys...
I have been diagnosed with systemic capillary leak syndrome which I have had the symptoms of for about 9-10 years. I am seeking information and other people who also have this as I live in New Zeal...
Diagnosed by the Mayo Clinic in Rochester , MN , with SCLS in August 2011. This was my second trip to Mayo. The first trip was in August 2010 and resulted in a 2 week stay and a suspected / working...
I have just been diagnosed with SCLS -8/18/2010 at the Mayo Clinic in Rochester, MN by Dr. P. Greipp. My first episode of this disease was June 2007. I played a round of Golf and had eaten dinner...
Wife of Mahaff
I have SCLS and think I am one of the oldest persons with this disease in this group. First attack, May 2007 after severe bronchial infection, 8 days in ICU in an induced coma; 14 days in hospita...
I was diagnosed with Systemic Capillary Leak Syndrome in May of 2010. This was after 3 months of extensive testing of every kind that did not explain the fluid retention that I had. I was first i...
My cousin has been diagnosed with this rare disease.
Atypical Systemic Capillary Leak Syndrome (current working diagnosis) Diagnosis made this year at Mayo Clinic in Minn. I am taking Theophylline and had my first IVIG a month ago. I first recognize...
I am a 56 year old female who has suffered from systemic capillary leak syndrome for 10 years. I leak almost constantly but my episodes are relatively minor with my largest 24 hour weight gain at ...
Surprise! I've got a rare disease! I'm still going to be a pain in the butt, though.
Searching for answers that no doctor has been able to find in over 5 years for my wife. In the beginning she was having severe body aches, menstrual problems, severe acid reflux. After having a par...
My daughter, Rebecca, was diagnosed with SCLS in 2007, when she was 2 years old. I've joined this SCLS community to learn more about this illness and its symptoms and treatments, and to share our o...
High, <p>&nbsp;</p> <p>&nbsp;</p>My name is Wout and my mother is diagnost with the clarkson capillary leak syndrom. We just recieved this diagnose 3 days ago two weeks afther she had an attack and...
Dear sir <p>&nbsp;</p> I have the pleaser to write about my casI`ll try to explain about may case . <p>&nbsp;</p>All start at 17/02/2008 I had a cove and I went to the emergency they give me anti...
My medical history briefly. It began in June 1995. After several months of hospitalization, I was diagnosed with SCLS of November 1995, immediately started plasmapheresis with a transfer of plasma ...
my extremely good friend was diagnosed 6 years ago and I am agressivley seeking information to assist him. We live in Longview, Texas.
seeking helping in treatment of my 16 year old daughter newly dx of idopathic systemic capillary syndrome
<strong>My husband's first episode</strong>: <p>&nbsp;</p> * December 31, 2009 <p>&nbsp;</p> * We were both ill with upper respiratory infection (confirmed to be Human Metapneumovirus). <p>&nbsp;...
I have suffered SCLS since 2007 and have had two near fatal attacks. My condition is currently being successfully controlled with Ventolin and Theophylline tablets, and I have had one attack in 18 ...
I am the mother of a 5 year old with systemic capillary leak syndrome. My daughter was diagnosed with this disease at the age of 17 mo. She receives infusions of IVIG, 25g every four weeks, and is ...
Our son Connor (born 4/7/05) was diagnosed with this syndrome on Christmas Eve 2009. This was his second episode in 9 months. His first one (March 2009) was when he had the flu and was misdiagnosed...
I am an infusion nurse who worked very briefly with Judy Davis and I would love to read the article on your website. Thanks. <p>&nbsp;</p> <p>&nbsp;</p>
I'm Judy Davis' sister
My sister, Judy Davis, died on November 27, 2009, after a five-year battle with SCLS. <p>&nbsp;</p> <p>&nbsp;</p>
Bonjour, <p>&nbsp;</p>Un urologue d'un service hospitalier m'a diagnostiqué cette maladie rare il y a quelques années.Le traitement proposé à l'époque, me faisait plus souffrir que la maladie... <p...
My father has just passed away from possible systematic capillary leak syndrome. He was not diagnosed with the condition eventhough he suffered from it more then once. <p>&nbsp;</p>I suppose I'm o...
I am a gastroenterologist working at the Department of Gastroenterology of the Ospedale V. Cervello, Palermo, Italy.
My sister-in-law, Denise, has SCLS. She is married to my brother, Mike The picture is of their daughters, Kate & Brooke. My nieces! They are wonderful! Denise was diagnosed in 2009. And, with med...
I've been diagnosed in 2006 with Idiopathic Capillary Leak. It is a severe case that has been constant since December,2004.I am being treat by a "Kidney-Doctor" and I'm on 20-mg of Lasix<em>2x/day....
first attack in 02/2009. the doctors find the exact diagnosis after 24h and in the meanwhile, I had two fasciotomies in the legs. quick recovery and no server damage in nerves and muscles. The doct...
I am a 61 year old male living in Decatur Al. I had my first major attack in 3/05, with 2 more in 07, and 08, 3 in all. I was diagnosed in 4/07 at Vanderbilt in Nashville,Tn by a research doctor, w...
I am the wife of a Systemic Capillary Leak Syndrome patient. I am interested in corresponding with other patients or family of patients.
Parent to a daughter with Systemic Capillary Leak Syndrome
I am french, I understand english but I don't write In french now Je suis malade SCLS depuis avril 2008 pendant 1 an j'ai eu des perfusions d'immunoglobuline et maintenant tous les 2 mois 1g/kg pen...
My name is Maria, I was diagnosed with SCLS in Feb 2011. I have the chronic form of SCLS with attacks every few days. I had my 1st major attack in January of 2004 at the age of 33, but I started...
Update 2016: <p>&nbsp;</p> <p>&nbsp;</p>I have been off IVIG since February. For now I am on Singulair and an ACE inhibitor. I have been having minor attacks but have been able to stay out of the h...
I am a stay- at- home mom of 7 children, (5 sons and 2 daughters). <p>&nbsp;</p>And yes, they are all ours, <p>&nbsp;</p>no, we have no twins, and <p>&nbsp;</p>no, we are not Catholic. <p>&nbsp;...
[Updated on January 2013] <p>&nbsp;</p>My daughter is 7 years old and has been diagnosed SCLS in May 09. She had 4 SCLS attacks, the first one in February 08, the last one in April 09 (she was 3-4 ...
My daughter, age 41, has been battling illness for almost 2 years now. It appears that she has systemic capillary leak syndrome, a very rare condition. We are very anxious to learn all we can abo...
I noticed swelling in my ankles in spring of 2007, which increased through that summer. I was working full time at a desk job, then on evenings & weekends at our home business helping with cleanin...
family physician , patient with scls
My first attact was in Oct 2005. I was disgnosed in June 2006 with Capillary Leak Syndrome. The first time I entered Mass General in Boston Mass the Dr's thought I had a virus due to the fact that...
I was just diagnosed with scls and am looking for any information on it, since my doctor was unable to give me much of anything yesterday. So I am taking it upon myself to do some of the research t...
sono la moglie di mario gatto se qualcuno in italia vuole contattarmi per avere informazioni sulla malattia puo' farlo su facebook mi chiamo marcella iannacchero
I live in Christchurch, New Zealand, and if I could find some way of connecting with some supporting people I would be very grateful. <p>&nbsp;</p> <p>&nbsp;</p>I have been living with SCLS since ...
Name: Walt Breidigan, Bethel Park, Pa. Born 1957 <p>&nbsp;</p> <p>&nbsp;</p>I have had CLS since February, 2005. <p>&nbsp;</p> <p>&nbsp;</p>The first incident gave me two total drop feet and no fee...
Heading a research study on Systemic Capillary Leak Syndrome at the National Institutes of Health.
I have had 7 recurring episode of Severe Capillary Leak Syndrome in the past 20 years. My last episode was in January 2013. Each one of the episodes was associated with a cold/upper respiratory in...
Widow of NC SCLS patient
I have had SCLS since 1997, It took 6 years to get it diagnosed. Aftyer it was diagnosed I went into remission for 5 years. After coming down with a systemic viral infection in the fall of 2008 my ...
my brother at age 43 suffered a capillary leak attack and was diagnosed 6 months later in 2004 at the mayo clinic in rochester by dr greipp and his associates. i was with him both times. he is now ...
White male diagnosed with Capillary Leak Syndrome at the Mayo Clinic in Rochester MN after a severe illness in Nov. 2003.
I´m from Guatemala. The MD told me that my mother have capillary leak syndrome, but here is not a specialist. I need help. I prefer if can write me in spanish. Thank you.
My name is Claude Pfefferlé. I live in the french speaking part of Switzerland. <p>&nbsp;</p>First acute episode of systemic capillary leak syndrome on May 2003. Failure of different treatments and...
j'ai été diagnostiqué avec le Syndrome de fuite capillaire depuis Mars 2006. j'ai pris des médicaments durant deux ans sans aucune rechute. En Janvier 2008, ça recommence... des hospitalisations ...
I am from Canada, My friend, 38 years old, mother of two beautiful childrens has this desease since 2006, and presently her situation is not controled. She is desperate to find a way to controle t...
Am an Indian national, want to join this community on clarkson's syndrome to know more about it, its treatment, cures if any and what prophylactic measures can taken.
I AM AN INDIAN LIVING IN KANPUR( UTTAR PRADESH) & I HAD 2 SEVERE ATTACKS SINCE 2007 (& HAD TO BE ADMITED TO ICU FOR RECOVERY), ALONG WITH 6 MINOR ATTACKS SINCE 2004 , AS PER MY ...
Physician focused on disorders of blood pressure control and sodium metabolism. Some experience with Idiopathic Systemic Capillary Leak Syndrome. Based at Weill Cornell and The New York Hospital ...
First scls attack on valentines day 2005. Many minor attacks and hospitalizations untill beggining IVIG therapy March 2010 I believe. Life changing cessation of symptoms until October leading to ...
My fiance Jeff was first diagnosed with SCLS when he was hospitalized in February 2005. We're in Washington, DC. He's been hospitalized numerous times since then.
Friends, family and patients with SCLS <p>&nbsp;</p> <p>&nbsp;</p>I am a physician at the Mayo Clinic in Rochester MN. I have been interested in helping patients with SCLS for many years. I am happ...
Mark is my name, I am the partner of my lovely girlfriend Cara, who has recently been diagnosed with SCLS. <p>&nbsp;</p> <p>&nbsp;</p>She has had a difficult time recently, with admissions to ICU ...
I am 36 years old and was diagnosed with SCLS in January of 2007. The first episode I had of this was quite severe and landed me in the ICU on a ventilator and in a medically induced coma. I was ...
I have had this syndrome since June 2007. I was diagnosised in Dec. 2007. I was having episodes about every 5 to 6 days. I had a severe episode in November of 2008. After a bad episode I would usu...
I am married to Richard and we have 2 wonderful sons 17 and 20 years old. I have been a Hopkins pediatric infusion nurse for almost 30 years. I enjoy church, reading, cooking and my family. I start...
I had my first episode of what turned out to be SCLS in November 2005, and was very lucky to have survived it (though with permanent disabilities in arms and legs, and thus in hands and feet) and t...
My name is David Isserman and I am one of the co-founders of RareShare. If you have any questions or feedback regarding RareShare, please feel free to contact me directly at david@rareshare.org.

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Someone else has to be like me!! Help

Created by Beverley | Last updated 25 Feb 2017, 02:02 PM

new member anyone else in UK

Created by rareshare5050 | Last updated 22 Jan 2017, 11:22 AM

Confused Anemia/Now Iron Toxicity

Created by kimberoumayah | Last updated 15 Feb 2017, 08:37 AM

new member anyone else in UK

Created by rareshare5050 | Last updated 25 Feb 2017, 01:53 PM

No more IVIG

Created by Gwendolyn20 | Last updated 11 Jan 2017, 07:28 AM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.