At the recent Rare Lung Disease Conference in Cincinnati I made comments regarding my case of PAP and how estrogen receptor issues were the most likely cause. The majority of evidence points to my exposure to the highly potent, synthetic estrogen diethylstilbestrol (DES), while in the womb 57 years ago. I came to this conclusion after reading literally, thousands of studies while tied to an oxygen machine while waiting for a lavage.
I strongly believe that this study, and DES, should be considered by anyone with PAP.
"Estrogens have well-documented effects on lung development and physiology. However, the classical estrogen receptor (ERa) is undetectable in the lung, and this has left many unanswered questions about the mechanism of estrogen action in this organ. Here we show, both in vivo and in vitro, that ERb is abundantly expressed and biologically active in the lung. Comparisons of lungs from wild-type mice and mice with an inactivated ERb gene (ERb -/ -) revealed decreased numbers of alveoli in adult female ERb- /- mice and findings suggesting deficient alveolar formation as well as evidence of surfactant accumulation.
Platelet- derived growth factor A (PDGF-A) and granulocyte-macrophage colony-stimulating factor (GM-CSF), key regulators of alveolar formation and surfactant homeostasis, respectively, were decreased in lungs of adult female ERb- /- mice, and direct transcriptional regulation of these genes by ERb was demonstrated.
This suggests that estrogens act via ERb in the lung to modify PDGF-A and GM-CSF expression.
These results provide a potential molecular mechanism for the gender differences in alveolar structure observed in the adult lung and establish ERb as a previously unknown regulator of postnatal lung development and homeostasis."
I believe our estrogen dependent biological systems were developed to a varied extent, in the womb, to run properly using the much more potent, synthetic estrogen DES; but after birth we only had the weaker and lower levels of the natural estrogen estradiol our bodies produce. I have 100 studies or more to back this up.
This is my case of PAP. But there are millions of others that were exposed to DES.
Why not more PAP cases? It all depends at what point, during your 9 months of gestation, the DES was given to your mother. Also, your symptom manifestation of exposure would depend on how high was the dosage, and how long did she receive the excess estrogen?
Millions were exposed, what condition they have would vary because only a rare few would have received or shared in common, the same dose, length of dosing or initiation point of treatment.
Just something to consider and give to your doctor.
Take care of yourselves, and each other!