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A Woman With Paroxysmal Nocturnal Hemoglobinuria Becomes the Latest Vaccine Injury Story

By / / Alexis Lorenze, eculizumab, fabhalta, Liz Churchill, meningococcal disease, paroxysmal nocturnal homoglobinuria, parvovirus B19, pure blood, Steve Kirsch, vaccine injury stories

If you have ever wondered where vaccine injury stories come from, you can see one be created in real time today in the story of Alexis Lorenze, a young woman who has paroxysmal nocturnal homoglobinuria.

Steve Kirsch and other anti-vaccine influencers are pushing the idea that vaccines triggered worsening of Alexis Lorenze's paroxysmal nocturnal homoglobinuria.
Steve Kirsch and other anti-vaccine influencers are pushing the idea that vaccines triggered worsening of Alexis Lorenze’s paroxysmal nocturnal homoglobinuria.

But is this really a vaccine injury that should scare you away from vaccinating and protecting yourself or your kids?

What is Paroxysmal Nocturnal Hemoglobinuria?

Let’s first talk about paroxysmal nocturnal hemoglobinuria, a disease that you have almost certainly never heard of.

“People with PNH have recurring episodes of symptoms due to hemolysis, which may be triggered by stresses on the body such as infections or physical exertion.”

Paroxysmal nocturnal hemoglobinuria

Paroxysmal nocturnal hemoglobinuria (PHN) is a rare disorder that causes affected people to create defective blood cells that get broken down by their immune system. People with PHN often have low red blood cells, white blood cells, and platelets (pancytopenia). They are also prone to develop blood clots.

Paroxysmal Nocturnal Hemoglobinuria Triggers

So what caused Alexis Lorenze to get sick?

Of course, anti-vaccine influencers want you to think that all blame should fall on the vaccines she had received.

Steve Kirsch and other anti-vaccine influencers avoid mentioning that Alexis Lorenze is positive for parvovirus B19, a virus which can trigger worsening if you have PHN!
Steve Kirsch and other anti-vaccine influencers avoid mentioning that Alexis Lorenze is positive for parvovirus B19, a virus which can trigger worsening if you have PHN!

They conveniently leave out the fact that the medical records they posted (medical records that were supposed to be complete, but only include labs and no doctor or nurses notes from before and after the vaccines were given…) include the fact that Alexis had tested positive for parvovirus B19, a viral disease that has been surging all summer.

“Parvovirus B19 has been shown to cause a severe drop in blood count (anemia) in some patients with certain blood disorders or with a weakened immune system.”

About Parvovirus B19

A viral disease that is notorious for triggering severe symptoms if you have paroxysmal nocturnal hemoglobinuria!

“The extensive purpura seen in our patient is likely a manifestation of PNH-associated cutaneous thrombosis, exacerbated by parvovirus infection.”

Extensive purpura as presenting sign of parvovirus B19 infection in a patient with paroxysmal nocturnal hemoglobinuria

Now, since these infections can trigger a flare of PHN, you can understand why her doctors would want her to be vaccinated. Vaccine preventable diseases can trigger flares too. And a natural infection can be life-theatening for someone with PHN.

What about vaccines?

There have been case reports of people with PNH having flares after flu, COVID shots, and meningococcal vaccines.

“Patients with PNH should receive vaccinations against certain types of bacteria to prevent infection. Ask your doctor which ones are right for you.”

AA MDS Foundation

In most cases though, the risk of a flare is outweighed by the benefit of being vaccinated for patients with PNH.

“Receiving a complement inhibitor greatly increases someone’s risk of meningococcal disease.”

Meningococcal Disease and People Receiving Complement Inhibitors

And of course, there is the simple fact that the treatment for PHN, eculizumab, increases your risk for meningococcal disease!

“To reduce this risk of infection, worldwide practice is for patients to be vaccinated at least 2 weeks prior to receiving eculizumab (serogroups A, C, Y, W 135 and B). It was noted within the PNH National Service at Leeds (UK) that a small number of patients deteriorated with enhanced intravascular hemolysis and thrombosis during the period between vaccination and eculizumab, leading to a review of practice.”

Thrombotic Events with Neisseria Meningitidis Vaccination in Patients with Paroxysmal Nocturnal Hemoglobinuria, UK Experience

That makes it essential to get your meningococcal vaccines if you have PNH and are starting eculizumab ASAP.

But why did she get three vaccines?

Another treatment for PNH, which can be given orally, Fabhalta, requires three vaccines to protect patients against Hib, pneumococcal, and meningococcal disease.

In fact, it is the standard of care and would likely be considered malpractice to start these medicines in someone who was unvaccinated or not going to get vaccinated.

Another Vaccine Injury Story Explained

Not surprisingly, Steve Kirsch and the other anti-vaccine influencers that are laundering this story across their social media accounts are leaving out some key details.

They want you to think that this is a general story about forcing unvaccinated people to get vaccines before treatment.

Steve Kirsch and other anti-vaccine influencers are pushing the idea that vaccines triggered worsening of Alexis Lorenze's paroxysmal nocturnal homoglobinuria.
This is anti-vaccine propaganda!

Instead, this is a highly specific story about requiring a vaccine because a treatment puts the person at high risk to get a vaccine preventable disease.

“The risk of N. meningitidis is mitigated by vaccination, ciprofloxacin (500 mg bd) on days 1-13 since we moved to vaccination on day one of complement inhibitor therapy, followed by daily prophylaxis with penicillin (or erythromycin).”

Management of Meningococcal Disease Risk in Patients with Paroxysmal Nocturnal Hemoglobinuria (PNH) on Complement Inhibitors: 18 Years’ Experience from the UK National PNH Service in Leeds

They want you to think that this is a general story about vaccines injuring people.

“We report the largest experience of managing meningococcal risk in patients on complement inhibitor therapy for PNH. Despite our proactive management we had 9 cases of meningococcal sepsis, with one fatal infection.”

Management of Meningococcal Disease Risk in Patients with Paroxysmal Nocturnal Hemoglobinuria (PNH) on Complement Inhibitors: 18 Years’ Experience from the UK National PNH Service in Leeds

Instead, this is a highly specific story about a young women with a rare disease that can be triggered by almost anything, from stress to infections, and yes, maybe a vaccine.

Both of these women are having nearly identical flares of Paroxysmal noturnal hemoglobinuria and both are positive for Parvovirus B19. Anti-vaccine influencers still want you to only blame vaccines for causing the symptoms of the women on the left.

Tragically, this is the kind of story that puts people like Alexis Lorenze at risk!

Being high risk, she relies on herd immunity to avoid getting exposed to infections.

Anti-vaccine influencers also want to blame her not getting pure blood as a cause for her reaction!
Anti-vaccine influencers also want to blame her not getting pure blood as a cause for her reaction! Fortunately, plenty of people are pushing back about the missing information in the story.

If this story scares you away from getting vaccinated and protected and you get sick, you could expose someone like Alexis Lorenze, who will almost certainly have a much harder time getting over that infection.

More on Vaccines and Paroxysmal Nocturnal Hemoglobinuria

Last Updated on September 19, 2024