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What we can learn from ‘tree man syndrome’- a rare disease.


I recently saw a tweet from @BBCWorld that made me wonder if their photo had been photoshopped. While I trust BBC News (World), we are currently being warned to be aware that there is ‘fake news’ out there on the internet. Further investigation on my part led me to realize that there is indeed a ‘tree man syndrome’, but Sahana Khatun is probably not the first female to exhibit this disease.

Colloquially called tree man syndrome, the medical name is epidermodysplasia verruciformis (EV), but it also is called Lewandowsky-Lutz dysplasia. Felix Lewandowsky and Wilhelm Lutz first drew attention to EV in ‘Ein Fall einer bisher noch nicht beschriebener Hauterkrankung’ (a case of not-yet-described skin disease) published in 1922 just after Lewandowsky’s death.

EV is in the category known as a ‘rare disease’. Perhaps fewer than 200 persons world-wide are affected by this disease, which is both genetic and viral in its expression and found in both males and females. EV is generally thought to be a recessive autosomal mutation of the genes EVER1 and EVER2, found on chromosome 17. These genes play a role in intracellular zinc homeostasis. The human papillomavirus (HPV) uses zinc as a cofactor in some of its protein, thus deregulation of zinc homeostasis plays a major role in susceptibility to HPV infection.

There are more than 170 different HPVs which affect about 20% of the population. HPV is so widespread that possibly the other 80% are simply asymptomatic. HPV may cause a wide range of diseases from noncancerous skin growths (warts) to a number of kinds of high risk cancers.

I hope Sahana Khatun has a long and happy life. If she lives long enough there may be a cure found for her and others suffering from EV. Finding that cure is important to more than the 200 persons suffering EV. Learning how to control HPV will play a role in controlling all those cancers spread through the HPVs.

Here are some links of interest:
           Background information on Epidermodysplasia Verruciformis
           Genetic and Rare Diseases Information Center (GARD)

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What we can learn from ‘tree man syndrome’- a rare disease.

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