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Ehlers Danlos and Photosensitivity???

Have you ever seen Ehlers Danlos present with extreme photosensitivity (malar rash without sparing naso folds and reaction to both fluorescent and outdoor UV on arms, thighs, chest, face and neck)? ANA negative; Celiac panel normal; thyroid normal; panel normal; etc. (been thoroughly tested - all normal)
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Avatar universal
I too have Ehlers-Danlos (mixed 1 &3) and have the same kind of extreme photosensitivity and facial rash. The dermatologist I went to specifically stated that this was Rosacea and also a side-effect of my skin being more permiable than most peoples because of the connective-tissue disorder. It is considered to act like an Auto-immune disorder but doesn't show up on ANA (mine is always negative when they check).

Also, I have rashes that appear in odd patterns on my skin other than my face that turned out to be a disorder called Pitryasis Lichenoides a chronic form of pityriasis rosea which causes eczema-like issues but also joint pain and feeling ill when it "flares up."  These diagnoses make it much more understandable to me than just "fibromyalgia" associated with the Ehlers-Danlos. However, there are no good treatments for these other than the Rosacea which can be treated, but the sun sensitivity is just par for the course.  I did find though that taking Omega fatty acids helped me reduce the photosensitivity and my rashes a lot of the time.
620923 tn?1452919248

  Hi...I too have EDS< but not the issue with the sun...I did for a short time after I had surgery and I think it was more related to meds I was on then the EDS.....

And I wanted to invite u both to the EDS group here on MedHelp.....http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?camp=msc

   "selma"

    
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