I was pretty amazed as I stood in front of the bathroom mirror that first night and watched my rash begin to 'change'. I immediately noticed a difference in my skin and the rash looked as if it were almost moving. It WAS moving. It was just so hard to believe that 3 minutes of this light therapy could work SO fast! Nothing had worked, but this...this I knew was working right away.
I was even more impressed as I watched the rash that covered Gary's body crawl away. As a wounded animal might crawl slowly away in search of shelter, his rash began to move as soon as UVA1 struck her first blow. Gary's rash took a little longer than my rash to completely clear up, but hey, it was much bigger and so thick and 'dug in' so to speak. But it did go away, just like mine. Equally impressive.
Valerie...Valerie's story is awe-inspiring.
Valerie's Story - How UVA1 Fixed Her CNS Lupus:
There was little hesitation on my part when a friend called with a pretty big request. They had a 'VIP' (as he put it) in Vegas who needed my help. Las Vegas? As in Nevada?? Here we go again I thought...hauling renovated tanning beds around the country! If only people had access to this light!
He told me how Valerie had been in a wheelchair now for months. She had been having tremors and seizures and was losing the use of her legs. But she had this special zoo and the zoo needed her back desperately. He explained how Val had been diagnosed with lupus long ago but now her doctors were thinking she was developing MS in addition to her lupus. That sucks. I said I would go immediately but that I needed to talk to her first. I needed to get a feel for her lupus and make sure she wanted to try UVA1 Phototherapy.
Our first conversation was just short of 2 hours long and I was almost convinced as we finally hung up. I wanted to do a little research before I jumped in the car but 90% of my being was screaming 'lupus!' And this light REALLY works on lupus. I had only come across one study involving central nervous system (CNS) lupus and UVA1, and it was only one patient, but lupus is lupus, and the light had worked on that one patient. So I did my research as the other 10% of me began the usual self-talk I require when considering road trips of long duration. The voices kept screaming, 'Just do it!' I had a lot of faith in the light but I didn't want to raise anyone's hopes. Valerie's lupus was serious-it was the most severe case of lupus I had ever come across. I knew I had to try. Valerie needed UVA1 and I needed Valerie.
We wrapped an old tanning bed (which had been converted into a UVA1 unit) up nicely in a giant tarp, duct taped it in so well it wouldn't even budge in a tornado, and set off for Vegas in my friend's truck. After a little sight seeing at the North Rim and a whole lot of curious truck stop patron questions (my favorite being 'is that a coffin?') we arrived at Valerie's zoo: Roos-N-More, in Moapa, Nevada. My first thought was, 'Wow, this zoo is awesome!'. My second, 'How the heck does she wheel around this place in a wheelchair? That needs to stop!' Moapa is about an hour outside of Vegas, it is hot, it is sandy, and she had hundreds of animals to take care of daily. A very sizable task for anyone wheelchair aside.
As I sat in Valerie's living room trying to explain how UVA1 Phototherapy works it became quite clear to me that I was there for a reason. Valerie and her husband Jay, both veterinarians, had dedicated their lives to this zoo. They started adopting animals years ago and before they knew it they had an exotic and quite remarkable collection of animals on their hands. There was no way the zoo could continue if Valerie kept getting worse. This zoo was everything to them. The chair had to go. (If you are in Vegas you need to stop by this zoo - it is educational and you will see animals you never knew existed.)
Surrounded by Val's family and zoo volunteers and while two baby monkeys sat on my lap exploring my hair and jewelry with intense curiosity, I pulled out my stack of ammo. Pictures, articles, research, the usual array even though most of the time lupus patients don't need so much convincing. I saw at least eight cats of different variety wander in and look me over, a few of which helped themselves to my lap without fear. A baby kangaroo hopped by, as if a normal every day occurrence, while one of the monkeys purred into my ear (they do that, just like a cat I guess...when they are happy. I was in love with this little guy!) Jay was busily running around tending to the animals while I was attempting to 'present' to Valerie. On one of his rounds chasing these amazing creatures through the house, with a look of concern taking over his face, he stopped in front of us to ask, "Are you alright? Do you want me to..." One of the babies continued to play with my hair and face some more as I shook my head. I laughed and looked at Valerie - heck no, don't take away the monkey!!
Valerie just looked sick. I remembered that sick. How it felt to drag through each day. I know she was trying hard to sit through the presentation for my sake. And there was so much going on around us. It was time for the light. I'd leave the research for her to read later. I set it all aside and we went out to the garage where the light unit had found its new home. Damn it I thought. I forgot her goggles! Boo...! UVA1 will damage the eyes just like any other wavelength of UV light - she couldn't do this without the goggles! Jay ran out of the garage and came back a few minutes later with a pair of sunglasses and some black electrical tape...that would do for now (although not recommended). I made her promise not to open her eyes, showed them how to work the unit, and left them alone for her first dose of UVA1. Three minutes. Just like my first dose - we were starting small to make sure she tolerated the light okay.
I tried not to hover too close to the garage door but I was so excited it was almost agonizing. Three minutes goes pretty slow when you are filled with such anticipation. But before I could go over too many unnecessary scenarios in my head they were out of the garage and giving us a tour of the zoo. I still can't believe Jay had spent so much time pushing her around the desert in that chair! They didn't have sidewalks and if you have ever tried to wheel yourself around in dirt and mud, well, then you know. This HAD to work. I would will it to happen. UVA1 would fix her lupus and turn that wheelchair into something more useful, like a flower planter or something. It just would. After that it was back in the truck and home. The rest we could do over the phone.
It wasn't much different with Valerie, UVA1 did not disappoint. She too knew right away that the light was working. She woke up the next morning with a sense of awareness she hadn't had in as long as she could remember. She was awake! It was early (one is never up early with lupus) and she could think straight...and she felt strong. The NEXT day she felt stronger. In less than a week after starting UVA1 phototherapy Valerie ditched the wheelchair. Her tremors had stopped, her muscles weakness had vanished, her pain was going away and she hadn't had any major neurological spells since her first dose. Awesome.
About a month after she started UVA1 Valerie went to her doctor for lab work. Her doctor noticed right away that something had changed and so did the nurses in his office. He hadn't heard of UVA1 but told her, "Whatever you are doing, keep doing it!" Two months to the day after our visit my friend's father (who resides in Vegas) showed up at the zoo unannounced to check on her progress and when he came through the gate he could not believe his eyes. There was Valerie, covered in mud, JUMPING off of the tractor to come and greet them. No wheelchair...she was climbing around on a tractor, jumping, working and full of 'piss and vinegar'. The light had worked. And the zoo had gotten Valerie back.
Valerie still uses those sunglasses that Jay taped up. The are like a good luck omen I guess; she says she can't bring herself to use the goggles I sent. It has been over six months since she started using UVA1 and her lupus is in full remission. Her serologies (blood work) are normal, her ANA is not elevated, even her anemia has reversed completely. Her eyes, which dilated unevenly before, are now dilating equally. All of the things lupus does-the dizziness and fatigue, pain, numbness, weakness and the lupus fog-it is all gone. The wheelchair now resides in the back closet.
When I asked Valerie for her testimonial statement she gave me over three pages of typed comments. It is hard to be concise when you get your life back from such an awful disease in such a startling manner, especially after years of treatments that only made you sicker. I think that the most important part of her testimony is this:
UVA1 gave Valerie her life back. Not only hers, but her whole family. Her children and her husband also got their lives back. When you have lupus, so does your family. UVA1 had allowed her to get back to being a wife and a mother. It gave her back the ability to help Jay with the zoo without the burden of pushing a wheelchair around. It gave them all hope for the future. That is the best part, the hope. When you are out of hope there isn't much to live for. You are ready to take more pills and wait for death, because at that point, death almost seems like a gift. She had nothing to lose, everything to win, and enough gall to try it. I didn't really know what to expect with such a severe case of lupus. I thought it would work, I hoped it would work, but I just didn't know. Fortunately, just like my lupus, Gary's lupus, and all the people I had read about in my research, Valerie's lupus was gone without a trace. UVA1 just works.
Here are a few short videos of Valerie with the severe tremors and muscle spasms in her legs before she started UVA1 Phototherapy:
Below are some pictures of Valerie before she started UVA1 Phototherapy, and then after it put her lupus into remission. They are astounding.