Anyone have pseudoxanthoma elasticum (PXE)?

Posted by gabo317 @gabo317, Apr 9 11:30am

Does anyone have any experience with the diagnosis and treatment of the PXE skin disorder?

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gabo317 | @gabo317 | May 8 10:59am

Skin Disorder ELASTOMAHas anyone dealt with this condition and found what works best for treatment?

sfterry | @sfterry | Jul 3 12:14am

Yes. I run the global clinical and research consortium - feel free to ask something specific.

Colleen Young, Connect Director | @colleenyoung | Jul 3 11:47am

@gabo317, I merged your two discussions into one place. As you likely know, pseudoxanthoma elasticum (PXE) is an inherited disorder caused by mutations in the ABCC6 transporter gene that affects connective tissue in some parts of the body.

@sfterry, I found PXE International https://www.pxe.org/about-us

Gabo, it sounds like PXE is causing changes to your skin. Is this a recent diagnosis for you? Is your dermatolgist familiar with PXE? How are you doing?

gabo317 | @gabo317 | Aug 19 11:59am

Had the gene testing, and it came back negative for the ABCC6 gene. So, now it appears that the dermatologist is leaning towards MDE, which has similar surface characteristics.
Anyone with this condition, and what have they used as a treatment?

gabo317 | @gabo317 | Aug 19 12:02pm

In reply to @sfterry "Yes. I run the global clinical and research consortium - feel free to ask something specific." + (show)

Had the gene testing, and it came back negative for the ABCC6 gene. So, now it appears that the dermatologist is leaning towards MDE, which has similar surface characteristics. Any new research on how to treat this condition—MDE.thanks

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