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Observations placeholder

Soliris and Paroxysmal nocturnal hemoglobinuria



Type of Spiritual Experience


Number of hallucinations: 17


Paroxysmal nocturnal hemoglobinuria or paroxysmal nocturnal haemoglobinuria (PNH), previously Marchiafava–Micheli syndrome, is a rare, acquired, life-threatening disease of the blood characterized by destruction of red blood cells by the complement system, a part of the body's intrinsic immune system. This destructive process is a result of a defect in the formation of surface proteins on the red blood cell, which normally function to inhibit such immune reactions. Since the complement cascade attacks the red blood cells throughout the circulatory system, the hemolysis is considered an intravascular hemolytic anemia. Other key features of the disease, notably the high incidence of thrombosis, are not totally understood.

PNH is the only hemolytic anemia caused by an acquired (rather than inherited) intrinsic defect in the cell membrane (deficiency of glycophosphatidylinositol leading to absence of protective proteins on the membrane). It may develop on its own ("primary PNH") or in the context of other bone marrow disorders such as aplastic anemia ("secondary PNH"). Only a minority (26%) have the telltale red urine in the morning that originally gave the condition its name.

It appears that a number of pathogens are implicated including both viruses and bacteria.  One case, for example, is linked to diptheria and thus the diptheria vaccine.  Given the link betwen bacteriophages and numerous diseases the cause may be entirely viral.


PMID: 22185802; PMID: 22146526;  PMID:  21969057


A description of the experience

Eculizumab (INN and USAN; trade name Soliris) is a humanized monoclonal antibody that is a terminal complement inhibitor. In people with paroxysmal nocturnal hemoglobinuria (PNH) it improves quality of life but does not appear to affect the risk of death. Its safety is unclear as of 2014. It is the first approved therapy for paroxysmal nocturnal hemoglobinuria. Eculizumab is also the first agent approved treatment of atypical hemolytic uremic syndrome (aHUS) with likely benefit based on two small trials

Adverse effects

In PNH clinical trials, the most frequently reported adverse events (AEs) were headache (44%), nasopharyngitis (23%), back pain (19%), nausea (16%), fatigue (12%), and cough (12%). In two prospective clinical trials in aHUS, the most commonly reported AEs were hypertension (35%), upper respiratory infection (35%), diarrhea (32%), headache (30%), anemia (24%), vomiting (22%), and nausea (19%). Twenty of 37 patients (54%) in the aHUS trials experienced a serious adverse event (SAE); the most commonly reported SAEs were hypertension (16%) and infections (14%).

Eculizumab inhibits terminal complement activation and therefore makes patients vulnerable to infection with encapsulated organisms. Life-threatening and fatal meningococcal infections have occurred in patients who received eculizumab. Due to the increased risk of meningococcal infections, meningococcal vaccination is recommended at least 2 weeks prior to receiving eculizumab, unless the risks of delaying eculizumab therapy outweigh the risk of developing a meningococcal infection, in which case the meningococcal vaccine should be administered as soon as possible. However, current meningococcal vaccines do not protect against strains of meningococcus with a serogroup B antigen and thus may not be sufficient to protect patients.

Eculizumab treatment is recommended to continue for the patient’s lifetime, unless discontinuation of therapy is clinically indicated. In aHUS clinical studies, 18 patients (five in the prospective studies) discontinued eculizumab treatment; TMA complications occurred following a missed dose in five patients, and eculizumab was reinstated in four of these five patients.

On Jan, 05, 2017 23,225 people reported to have side effects when taking Soliris.
Among them, 17 people (0.07%) have Hallucination

Time on Soliris when people have Hallucination  :

  < 1 month 1 - 6 months 6 - 12 months 1 - 2 years 2 - 5 years 5 - 10 years 10+ years
Hallucination 87.50% 0.00% 0.00% 12.50% 0.00% 0.00% 0.00%

Gender of people who have Hallucination when taking Soliris  :

  Female Male
Hallucination 100.00% 0.00%

Age of people who have Hallucination when taking Soliris  :

  0-1 2-9 10-19 20-29 30-39 40-49 50-59 60+
Hallucination 0.00% 11.11% 0.00% 88.89% 0.00% 0.00% 0.00% 0.00%


On Jan, 11, 2016: 7,736 people reported to have side effects when taking Soliris. Among them, 213 people (2.75%) have Death.

Time on Soliris when people have Death  :

  < 1 month 1 - 6 months 6 - 12 months 1 - 2 years 2 - 5 years 5 - 10 years 10+ years
Death 76.61% 9.68% 1.61% 4.84% 6.45% 0.81% 0.00%

Gender of people who have Death when taking Soliris  :

  Female Male
Death 42.68% 57.32%

Age of people who have Death when taking Soliris  :

  0-1 2-9 10-19 20-29 30-39 40-49 50-59 60+
Death 0.00% 2.17% 2.72% 1.63% 5.98% 9.24% 25.00% 53.26%

Top conditions involved for these people  :

  1. Paroxysmal nocturnal haemoglobinuria (213 people, 100.00%)



The source of the experience


Concepts, symbols and science items



Science Items

Activities and commonsteps