My Lupus diagnosis was life-changing and traumatic. I spent years learning to adjust and to live with the light allergy that comes with Lupus for many patients. I spent years learning about pharmaceuticals and how to take them, and I spent years seeing specialist after specialist trying to slow down its vicious and multi-pronged attack. Doctors do not know a whole lot about Lupus and they have little time to discuss it with you if they do. We really do have to be our own advocates when it comes to health care and knowing your disease. Unfortunately, there is also a lack of useful and reliable information available on Lupus. You may find 2 books in the bookstore, a few more online…but mostly you find stories of gloom and doom, or on the opposite end, stories of how you can live a normal and flowery life with Lupus. But in between, not a whole lot of information on how the disease works, how light affects you, how to recreate your boundaries as an adult with a sudden chronic illness and not a lot on how to live with it. And Lupus is not equal. It can be easy and only rear its head occasionally with long periods of remission. It can also be messy and fatal and not respond to medical treatment. It is confounding.
Until this year, there had never been a drug approved specifically for Lupus. Treatment usually involves high doses of steroids and other toxic drugs that take a lot more drugs to mediate the side effects of, and these drugs are usually for cancer or kidney failure…these drugs may also CAUSE some cancers and kidney failure in return…they all suppress your immune system and open the door for a host of other dangers. It is a no-win situation in many cases. The drugs are worse than the disease but at least you live 20+ years instead of 5! These are your options with progressive Lupus. A life full of ER visits because you messed up your pills for the day, dodging from shadow to shadow while glaring longingly at the Day-Walkers happily jogging by in their little tiny outfits, all nice and tan…waiting rooms and pharmacy lines, sunblock 5 times a day and horribly fashioned long-sleeved, full legged , giant hat, and don’t-forget-the-gloves dress code. Waking up every morning not knowing what to expect when you look in the mirror, going bald, this is all, well…LAME!
Enter UVA1 phothotherapy…!
About 30 years ago, a doctor in New Orleans, Hugh McGrath, figured out that mice were responding favorably to a longer wavelength of light in the UV spectrum, UVA1. These mice, who had Lupus, lived a normal and healthy life after being exposed to just this one wavelength. Then he put people in. And it worked on them too…for many years now, these Lupus patients have substituted a natural light therapy for toxic pharmaceuticals and they have remained stable. This light has passed into 2nd stage FDA and is off-label prescribeable for Lupus, but no one knows it exists. It is public domain. It does not involve drugs. Not a lot of people in the medical world know much about light and the equipment is very expensive. It actually works and has an AMAZING success rate in reducing Lupus disease activity. It fixes chronic fatigue where nothing else seems to work, but it is totally counter-intuitive. And that is just the beginning of what UVA1 can do; it has been shown to be effective in other connective tissue diseases, some T-cell based cancers, HIV and other viruses, Graft-Versus-Host, and in Mast-Cell diseases leading to kidney failure. This light works on severe Scleroderma, Eczema, T-Cell Cutaneous Lymphoma and recently has been favored in the treatment of other diseases formerly treated with other wavelengths of light. The list goes on and on! This light is thought to be safer because it is not the light that tans you, UVB and short wave UVA are the dangerous wavelengths of light for Lupus patients. UVA1 is longer and goes through your skin into the cellular layer. It DOES NOT TAN and it HAS TO BE UVA1 ONLY if Lupus is involved. Please do not confuse shortwave UVA with UVA1 (340-400 nm only).
Lupus Underground by Anthony DeBartolo explains how this light works and also has some of the clinical trials that have been done with UVA1 and Lupus. I encourage you to check out this book, it is packed full of easy-to-read information on Lupus and it really did change my life. Thank you DeBartolo for writing it, Dr. McGrath for discovering it, and Mike for finding it-you rock!!
Upon discovering this book and then building my own unit, which worked immediately, and then becoming fully stabilized and remaining in remission for over a year now, I wonder how can it be that we continue to feed giant doses of toxic and expensive drugs down the throats of the chronically ill while this awesome light is out there not being used?? Why did I have to pay asinine amounts of money to take drugs that made me even sicker while fighting insurance claims and trying to keep up at work so I could continue the viscous cycle if I could have just gotten into a light?? This discussion is long and involved, it will be ongoing. It is time to take back our kidneys and our livers and our lives, and push for more research and funding for UVA1 phototherapy. I hope you will help me raise awareness. If enough of us demand the light, I believe that we can get the light.
I formed Phototherapy Solutions, LLC as a vehicle to create change. I intend to do everything I can to raise awareness about this light. I hope to help people gain access to this light. I hope that I can get funding directed to UVA1 and the amazing potential it shows. In addition, I hope to build a giant bank of resources for Lupus patients and for others battling chronic illness. I hope to save a few more people time and misery by providing reliable and accurate information through videos, links, partnerships and other resources for the newly diagnosed. And I hope that this website will become a forum for those who have been affected by Lupus and perhaps a vehicle for changing the way we treat this disease along with other chronic illnesses. Thank you for visiting my website, please come back for more posts and updates as this journey continues!
- Joanne “Miki” Arndt
“You must be the change you want to see in the world”, Gandhi