My name is Aaron I was diagnosed with capillary leak syndrome in 2009 have had no episodes since then not on any maintenance drugs for the syndrome. General practitioner, oncologist hematologist maintaining my disease, visited Dr Phillip Griep who verified the diagnosis back in 2010 and told me I should never be vaccinated for anything just stay healthy stay fit stay strong. Now this monster covid came around pretty much been at home not around anybody besides close family taking extreme precaution not to get it. I guess the question I'm trying to ask here is if I should get the covid vaccine I really want to ,do have some fear about getting it and triggering another attack. I read several articles on this form of people with capillary leak syndrome and it seems like some have gotten the vaccine and some have not. A lot of my doctors are unsure so don't want to give me a answer. Any help or advice any of you could share with me would be greatly appreciated.

Dear Aaron,

i cannot reccommend whether you should get the vaccine or not, since it is a very delicate decision. However, I can share my experience and say that I am not vaccined as my doctors advised me against it.

The main reason I chose to follow their advise, is that I'm not receiving IvIG infusions due to my kidneys that were affected in each and every single one of the 3 SCLS episodes I've had so far. And since the published medical reports and our fellow members of this forum who have transmitted their experience through previous posts, have shown that there is in fact a great possibility of capillary leakage upon both Covid contraction and/or vaccination.

Whatever the decision you make, I reccommend that you are fully prepared in regards to direct communication with your doctors, a nearby hospital and why not a printed ER protocol which you will find available in the Resources list of this forum.

Best of luck and keep strong!

Sincerely,

Valeria.

Aaron,

The issue of whether to vaccinate against Covid has been the subject of discussion in several prior forums, but I call your attention to one from a year ago, where the world’s leading authority on SCLS, Dr. Kirk Druey from the U.S. National Institutes of Health, published an article and gave an interview giving his best advice on the matter, see https://rareshare.org/topics/2140

In short, he urged SCLS patients to get the Covid vaccine, preferably the Pfizer or Moderna vaccines, but to do so once they are on a preventive regimen of IVIG (preferably a full dose of 2 gr/kg every 4 weeks or 1 gr/kg every 2 weeks), AND to get the vaccine in the few days after their infusion, when they have the maximum degree of protection against an episode of SCLS.

And to my knowledge, SCLS patients who had already met, or have since met, these conditions have not had a problem with their Covid vaccinations. You or your anchor physician are welcome to contact Dr. Druey to check that his advice still stands, and how it applies specifically to your case.

However, we have had some duly Covid-vaccinated SCLS patients who have come down with a light case of Covid, and a handful of us – including me, see https://rareshare.org/topics/2165 – have experienced an episode of SCLS shortly after, nonetheless.

This seems to be particularly true when an SCLS patient is running low on IVIG, namely, whenever we are days away from receiving our next infusion, and thus we are relatively vulnerable to the effects of a viral infection – and yet, that happens to be when we catch Covid.

But at least, because we are duly Covid-vaccinated, our infection is a light one and our doctors can focus on managing our episode of SCLS, mainly by giving us IVIG immediately, without having to worry about the potentially devastating effects of the Covid infection.

And by the way, Dr. Druey's advice has generally been that we should be vaccinated against everything, for example, against the flu every year, provided that we are receiving IVIG on a regular basis and get vaccinated in the days after receiving our infusions.  Feel free to check about this with him directly, as well.