Lupus Message Boards
Register Latest Topics
 
 
 


Reply
  Author   Comment  
taffylinden

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 964
 #1 
CNN is running a section on their website on Lupus. It's good that they're educating the public on lupus and how we can look healthy even though we're sick. Kudos on that. But I saw a video segment that ticked me off. It basically says if you stay out of the sun, take care of yourself, and take your meds, you'll be fine. There's an Atlanta doctor who says that very thing. They feature a woman who's very nice and who was very sick--but then she went on meds, and she's been fine since, thanks to those meds and a positive outlook. No mention of the med side effects or drawbacks or how some meds don't work for some people. 

I sat there watching and thought, "Ohhhhhh, THAT'S where we all went wrong! We didn't take our meds. We got sun. Why, if we'd just avoided sun and taken our meds, we'd be fine! So it's our own fault if we have flares. Silly us! It's all so easy!"

Grr. Here's the link in case you want to see for yourself:
 http://www.cnn.com/videos/living/2016/02/09/a-positive-outlook.cnn


Cakelady

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 4,745
 #2 
This makes me so mad
__________________
The bond that links our true family is not one of blood, but one of respect and joy in each other's life
NineLupusLives

Avatar / Picture

Active Member
Registered:
Posts: 39
 #3 
Hi all,

I saw this print article on CNN this morning. It lists many celebrities who are battling lupus. Some that I was unaware of.

http://www.cnn.com/2017/03/28/health/lupus-disease-causes-symptoms-treatment/index.html

For me, personally, the article hit home when it delineated the memory problems of lupus. I'm battling that right now pretty hard, along with rashes, fevers, joint pain, and not responding well to my meds.

If only I could find some of those rare-as-hen's-teeth light bulbs that Anthony was on to!!

Hugs,

9 Lives

__________________

Life is what happens while we are planning to do something else.
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,426
 #4 
Yeah, it's so sad that Anthony's thread was removed (smiley: Smileycuss2 - keystrokes: :cuss), there was sooooo much valuable information there.
__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
Cakelady

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 4,745
 #5 
9 shutterbug uses an LED light and it really helped her. I will see if she will post it
__________________
The bond that links our true family is not one of blood, but one of respect and joy in each other's life
shutterbug

Avatar / Picture

Contributing Member
Registered:
Posts: 382
 #6 
Sorry I haven't beeen on here much since the birth of my grandson. I forgot how time consuming and energy draining babies can be! Between him and my youngest daughter's health problems, I have been on the go and permanently exhausted. Haven't done a light treatment in awhile because it requires being naked for at least 40 minutes and when I'm run down, I can't seem to get warm. Not to mention the time and energy fending off the amorous husband. Lol

From what Anthony and I discussed the fluorescent bulbs in the 365nm light spectrum in a tanning canopy is a far more ideal way to get the needed UVA1 than my little LEDs. Due to how light sensitive I am I was terrified of the fluorescents and the little amounts of UVA and UVB that came from using it without a filter. There is no way to just buy a filter for it and there was a lot of discussion on the old forum about what did and didn't work as a filter for most people building their own. In the end another forum member contacted me and told me about her light sensitivity (which sounded worse than mine) and she had done a lot of research and found LED bulbs in the correct light spectrum. She swore by them and said that she had no side effects from them.

They are from a company called Xenopus Electronix. It is a High Flux 365nm Ultraviolet LED bulb. They are not cheap, as I think I paid $350 each several years ago. I need more than the two that I have, but there hasn't been enough room in the budget for any more of them. Anthony told me once that to do a proper light treatment with these bulbs, that I would need between 4-6 for someone of my height. I'm only 5 ft 3, so a taller person would need more. Hope that that helps. I will follow this thread in case anyone has any questions

Previous Topic | Next Topic
Print
Reply

Quick Navigation: