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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Eoinok

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Posted 31 May 2015 - 06:07 PM

I have found a doctor who offers UVA1 light therapy but my work schedule and the travel distance involved mean I can only receive treatment once a week. From what I've read online, three times a week is the norm. I know that in the USA you can purchase a small unit for the home, provided you have a prescription. Has anyone heard about this in other parts of the world? I live in South Korea but information about Europe would also be useful. 

 

Thanks.



#2 Shelley Ensz

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Posted 31 May 2015 - 06:33 PM

Hi Eoinok,

 

The company that manufactures UVA1 units is Daavlin. They list distributors in South Korea, so it may be possible for you to get one. They have a contact form for inquiries on their site. Just go to daavlin.com for more information.

 

And remember that of course, you want to make sure that you very carefully follow all of your doctor's instructions for treatment, and keep all of your follow-up appointment for skin cancer surveillance and to track your symptoms and recommended dosage. Your doctor will start by running a skin test, to determine what dose you need to start at. 

 

Do not *ever* get in the headset that "more" will be "better".  You need just the exact dose prescribed to be beneficial for your immune system and not cause you to burn to a crisp. The sessions are extremely short (a matter of mere seconds) so always check and double check your settings, you cannot be too careful in using it.  Also, be sure to get protective equipment such as the UVA1 goggles and a face shield, and to read and follow all of the safety instructions.

 

Let us know what you find out, and how things go for you.

 

:hug-group:


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Shelley Ensz
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International Scleroderma Network (ISN)
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#3 Eoinok

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Posted 31 May 2015 - 06:37 PM

Thanks. I have been to the Daavlin site and used their contact option to ask about delivery to South Korea. I was thinking it wasn't very likely they'd deliver here, but since you mention they list South Korean distributions there might be hope after all. I hadn't noticed that on the site.

 

Thanks again. If anyone else knows anything, please let me know!



#4 Eoinok

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Posted 13 July 2015 - 01:50 PM

Update. I've been in contact with a Daavlin representative and they do indeed ship units to South Korea. However the cheapest would cost more than $3000 with delivery, commission etc. so at this time I can't justify buying one.

 

But I've been able to work it out with my boss so I can visit a UVA1 equipped clinic twice a week, instead of just once. From what I've read online, twice a week is reasonable. 



#5 Amanda Thorpe

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Posted 20 July 2015 - 11:49 AM

Hello Eoinik

 

I am not surprised to find out that UVA-1 devices are rather expensive! It's good news that your boss will let you have the treatment twice a week and I wish you well with it.

 

Let us know how it goes and take care.


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