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Sunbeds


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5 replies to this topic

#1 Kiwi

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Posted 06 March 2007 - 11:48 AM

Hi everyone
I have heard that the UV can help Scleroderma. Does anyone do sunbeds or know anything about this?
Cheers, Megan
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement

#2 Clementine

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Posted 06 March 2007 - 03:37 PM

I have heard just the opposite........but let's wait and see what others have to say.
Jen

#3 Heidi

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Posted 06 March 2007 - 04:27 PM

Hi,

Here is a link from our Sclero A to Z web page that talks about research looking at PUVA/UVA-1 and Phototherapy.

I don't know if this is the same UV light used in sunbeds, but it will at least give you some information on UVA light and scleroderma.

Warm wishes,
Heidi



#4 Jordan's Mommy

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Posted 06 March 2007 - 08:35 PM

Hi Kiwi,

My daughter's dermatologist has suggested that we look into UVA/light therapy when she is older (she's only six) to help with the discoloration. He recommends short daily spurts of sun exposure, but always with sunscreen.


Jennifer

#5 Sweet

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Posted 08 March 2007 - 05:24 PM

I go one a week at times. It helps the pain that I get in my joints. It's NOT good for you either, but sometimes it the lesser of two evils. I only stay in for 10 mins.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 scleroguy

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Posted 09 March 2007 - 03:43 AM

Hi Megan,

I have been receiving PUVA treatments on my hands and feet for the past two to three years. I went twice a week at first, and now go once a week.

The PUVA treatments seem to have helped stop the puffiness and skin tightening, and then slowly improved them. It also seems to help with my Raynaud's.

The improvements were slow, but I noticed a difference within a few weeks of stopping treatments. I had to start again.

Best wishes,
Ron

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.