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Data · Results

The survey results

423 respondents across more than 10 countries. Here is what the numbers show.

What this page covers: the quantitative results of the international survey (N=423). For methodology, see Data → Survey. For biases and what these figures don't prove, see Data → Limitations.

Key figures

96.0%Female
77.4%Significant childhood trauma
5.4:1Maternal / paternal transmission ratio
94.8%Difficult diagnostic trajectory
94.5%Urinary histamine never measured
68.8%Children similarly affected
9.7%SIDS history in family
93.8%Willing to join a formal study

Convergent signals

🧬
Predominantly maternal transmission

42.1% report exclusively maternal transmission. The maternal-to-paternal ratio is 5.4:1. Only 7.8% report exclusively paternal transmission.

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Childhood trauma as terrain programmer

77.4% of respondents who answered this item report significant stressful or traumatic events during childhood (ages 0–18).

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An unacceptable diagnostic odyssey

94.8% experienced difficulties before receiving appropriate care. 80.9% went through years of odyssey or still have no adequate care. 94.5% never had urinary histamine measured.

👨‍👩‍👧
A terrain that transmits to children

68.8% of parent respondents report their children present with similar conditions. 9.7% report a SIDS history in their family or close circle.

Nomenclature proposal

Beyond "idiopathic"

These findings support the hypothesis of a Programmed Mast Cell Hyperreactivity Syndrome (PMCHS) — a heritable terrain, transmitted predominantly along the maternal line, amplified by perinatal history and life stress. The term "idiopathic" no longer reflects what the data shows.

See also