After fixing my own lupus with a UVA1 Phototherapy I was fortunate enough to gain the support of my dermatologist who had witnessed the whole affair. He stuck with me when I went to the Mayo Clinic, he stuck with me after realizing that my rash was not in fact Ring Worm, and he stuck with me after I quit taking all my meds and instead built my own UVA1 unit-much against his better judgment. Most doctors won't even consider a light therapy for lupus due to the extreme photosensitivity that usually comes with the disease. UVA1 is way outside the box.
I most often heard "You'll go into renal failure!" (I heard this in my head regularly in the same tone that the movie A Christmas Story presents the phrase "You'll shoot your eye out!") Over and over again, I heard this warning. And while I sweated and prayed a whole lot before that first 3 minute dose of UVA1, I am glad I ignored the warnings. Had I listened, I would still be on drugs, covered in a rash, and not here telling you about Gary's story...
Gary had lupus. He was covered from head to toe in a giant (and I mean GIANT) rash that was utterly relentless. This rash was a living, breathing creature on the hunt for more skin to devour. And it was hungry! Gary was being treated by the same dermatologist who I had been going to for years, and similar to my case, was having no success with traditional medical therapies. They had tried everything in the book for over a year, but the relentless rash continued its takeover. Gary was desperate and the only body parts left for the feast were his scalp and the bottoms of his feet. The rash continued...and finally our doctor told Gary that there was nothing else they could do. His lupus was going to win and the rash would see victory.
After telling Gary there was nothing else to try, Dr. Awesome handed Gary my card and said, "But this girl may be able to help-give her a call."
Gary was at my house the next morning for his first dose of UVA1 Phototherapy. In fact, he showed up an hour early. It was pretty clear that he was desperate to get his skin back. When you have a rash like that, you are pretty isolated. People won't shake your hand nor will they sit next to you on a plane. Even if you wear a shirt that says, "You can't catch it", people will avoid you. At this point, Gary had lost the ability to wear his favorite boots or wear his wedding ring. Even putting on his clothes was close to intolerable. He was ready to go outside the box-so ready, he asked me to skip the introductory explanations on how the light works and just turn it on.
By the next morning Gary noticed a change in his rash - much like I did the day after I began UVA1. He called me in a state of mixed emotion, excitement labored with hesitation and skepticism. He wanted to know if it was normal to see a change this fast and I told him that it was, especially with as many antibodies as he had floating around in his system. With UVA1, the sicker you are, the more drastic the effect. We started with a schedule of every other day for the first few weeks to build up his dose (UVA1 is cumulative), and moved to every 72 hours after that. He never missed a light session.
Before too long, the rash was gone. Just gone. In its place was new, healthy, shiny perfect skin. I will never forget the morning about 2 months into his therapy when he showed up with his wife. She came in, hugged me, and gave me a copy of a prayer by Mother Teresa (which I have permanently taped to my front door so I can see it every day and will share at some point in one of my blog posts). Gary had tears in his eyes. He grabbed my shoulders and looked me square in the eye and he said, "Miki, you gave me my life back! I have hope again. I am wearing my favorite boots!" While I wasn't the one doing the work, UVA1 did that, the appreciation and being able to witness someone else 'steal' their life back from the jaws of lupus was awesome. Go light!
Below you will find "Before" and "After" tabs - these are the pictures of Gary's rash before starting UVA1 Phototherapy (there are also a few pics as UVA1 started to kick in), and then after completing 3 months of it. My camera doesn't do his rash justice, I need a professional one for this type of thing, but the pictures are clear. And more than a year later, Gary's labs are clear, his lupus is in full remission and he has no rash. Please take a few minutes and check it out. A picture speaks a thousand words...