News Archives

Another Lupus awareness video – short and sweet! Be well…

I’ve seen this commercial on TV and am very glad to see Lupus Awareness spreading…

Here is a recent Medscape article about what may be the underlying cause or driving mechanisms for Lupus.

Two new studies published in the journal Science Translational Medicine point to a cycle of cell death and chronic inflammation involving blood cells called neutrophils, versatile soldiers of the immune system that race to the site of infection to destroy invaders, as a key engine in the disease.

The discoveries come during a week when the FDA is expected to announce its decision on the biologic drug Benlysta, which could be the first drug approved to treat lupus in nearly 50 years.

According to the Lupus Foundation of America, lupus affects about 1.5 million Americans, many of them younger women.

It is very exciting to see research moving forward in this area since nothing has been accomplished in over 50 years. Good for these guys!

Here is another great Lupus awareness video, it really gives insight into what Lupus patients go through and what the Alliance for Lupus Research does to help, check it out:

This poor girl…! She got Lupus early, and has obviously suffered a lot. I had moon face from high doses of Prednisone as well but geez…!

A side note: I just read an interesting article on Transfer Factor Plus, a new way of introducing extra warrior cells into your body and increasing your T-cell activity (I think, it is very dense reading)-it sounds like a very promising and safe new therapy for a lot of different diseases & autoimmune conditions including: MS, Sjogren’s, Arthritis, HIV, Crone’s, skin conditions, cancers and more!  She also mentions blood irradiation. I believe that this is a therapy using UVA1 light to irradiate a patient’s blood and then put it back, much like when you donate plasma. UVA1 Phototherapy is the light therapy that also put my Lupus in remission for the first time and kept it there, although I did this without the blood being removed and cycled back in.  I am very excited to find that there are other Lupies giving UVA1 phototherapy a try! 

I want to be very clear here:  UVA1 is NOT the same as UVA or UVB light, it is filtered out of the UV spectrum and HAS to be a specific wavelength, 340nm-400nm ONLY.  It is DANGEROUS for any Lupus patient, or anyone else with photosensitivity, to be anywhere near UVA or UVB wavelengths.  Lupus patients should also not confuse PUVA with UVA1, another form of phototherapy where a photosensitive-inducing agent is administered to the patient prior to light exposure.  Again, this can be deadly for a Lupus patient!  UVA1 is longer than the shorter UVA and UVB wavelengths; it goes through your skin into your cellular layer, it does not tan, nor has it shown to be toxic like its shorter siblings.  Please do not mistake UVA1 for any other light wavelength.  

For those interested in reading more on this Transfer Factor Plus therapy, here is the article I mentioned:

Transfer Factor Plus therapy

And again, here is the link to Lupus Underground, the book that explains how UVA1 phototherapy came to pass, how it works, and it provides the clinical studies as well.  This book is an easy read and has a lot of great information on Lupus.  It gave me back my life from Lupus and I really hope you will take a moment to read about UVA1…even though it is counter-intuitive and ‘alternative’, please give it an open mind and check out what it did for my Lupus and continues to do for my Lupus as I update this site.  Be well and don’t be in the dark!!  

“Any unexplained phenomenon passes through three stages before the reality of it is accepted:
During the first stage it is considered laughable.
During the second stage, it is adamantly opposed.
Finally, during the third stage, it is accepted as self-evident.”
- After Arthur Schopenhauer (1788 – 1860)

Here is a website packed with Lupus resources and links, check it out!!

Lupus Magazine

Here is an interesting study done on Lupus patients and Vitamin D levels…

http://ard.bmj.com/content/70/9/1569.abstract

Some studies suggest that over 50% of Lupus patients will file for disability within the first year of diagnosis. Here is an interesting article on Lupus and the workplace:

Lupus & Employment

I think that another huge factor with Lupus disease activity is fluorescent lighting in the workplace. Sitting under those lights cannot possibly be helpful, florescent bulbs emit 6 times the UVB as natural sunlight (DeBartolo). If you are lucky enough to have an employer who is willing to work with you, some Lupus patients find that it helps to work out a flexible schedule such as coming in at 10am twice a week instead of earlier & staying later, or working from home. Hopefully, as Lupus awareness increases and more is understood about how Lupus affects a person this will become an option for more patients. Until then, where plenty of sunblock and long sleeves!!

Okay…I’ve already been attacked for trying to “sell my business or a product” on Lupus support blogs. I need to say this for the record:

This website IS NOT about profit, yes, I have an LLC called “Phototherapy Solutions”, it generates NO income, I established it to put some funding through for exactly this, a website where I can try to put together some resources and information that will HELP other Lupus patients (and people who have other chronic & hard to treat diseases). I am simply trying to tell my story, raise awareness and help people who might have ‘run out of options’ with traditional medical care and toxic pharmaceuticals. This is an FDA-approved light therapy that is PUBLIC DOMAIN. If I DO come up with a product, it is a product for Lupus patients–developed by a Lupus patient who knows that the reality is this: if we don’t find a way to provide affordable UVA1 phototherapy for Lupus patients, especially for at-home treatments, then this awesome and effective light therapy will remain unheard of.

The day I found out I never had to go through those years of sometimes over 40 pills a day and chemotherapy and that I could have just tried this non-toxic and very effective light therapy, I swore that I would try to prevent this from happening to anyone else.  It is wrong that we push pills and ignore alternative and highly effective therapies in this country.  We need to take back our health, and UVA1 gave me back my health.  I hope I can do the same for others by spreading awareness and knowledge, and yes, even possibly in the future, equipment that is affordable.  It cost $399 a session for phototherapy at the Mayo Clinic.  I am not sure there are more than 5 other places in the US you can even find UVA1 phototherapy, IF you could get a prescription for it.  The UVA1 equipment on the market is $100,000 and targets hospitals and clinics.  This is a HUGE issue with getting access to this therapy as a Lupus patient.  It is my goal to make this easier.  Please help me by spreading the word!!

Again, the book that changed my life, gave me back my life and explains how this light works on Lupus and offers clinical study information as well, is: 

Lupus Underground