Negotiating a planet in which light is the source of life is strategically challenging for someone to whom UV radiation is noxious. However, with information and planning, life away from light can be managed. Photosensitivity, for most, implies an adverse reaction to UV radiation. Artifical sources of light, indirect illumination and UV screens facilitate a life in the shade.
However, none of these accommodations addresses a major obstacle in negotiating a life away from light.
It is likely that I have been UV sensitive all of my life, although this phenomenon has only been quantified in the last twenty years or so. When I was a child my siblings used to taunt me with a chant: “fun in the sun”. Apparently I did not enjoy activities that were carried on for long periods in bright sun shine. As I got older, I sought shade as a natural place of comfort. Pictures of me with my children as infants reveal a woman squinting against the sun under a wide-brimmed hat.
The first time a physician suggested I was reacting to UV was when a dermatologist noted that a rash that had broken out followed like a chart the areas of my skin that had been exposed to the sun. Another dermatologist told me to wear sun screen year-round because of a pattern of discoloration that had become evident on exposed areas.
There came a time when I was diagnosed with systemic lupus. It was not surprising that photosensitivity was one of the manifestations of my disease. A lot of things became clear to me–why I would break into a sweat when I was in stores with bright overhead lighting. Not only would I sweat but my cheeks would redden and my discomfort would grow so that I had to flee from the store, sometimes leaving my as-yet-unpurchased items behind.
Of course, as people who are photosensitive know, reacting to UV is not simply a matter of feeling uncomfortable. It is not even a matter of getting a little rash. UV exposure makes us sick.And that’s the part where public perception comes in. That’s the part other people don’t get.
When I say, “I have to get away from these fluorescent lights,” I don’t mean I might get a little headache. I mean that a disease process will be activated.
Last year I wrote a book about lupus and one of the things that prompted me to write the book was when I read about Hannelore Kohl, the wife of the (ex) German Chancellore, Helmut Kohl. Hannelore Kohl committed suicide. Every news item I read described her death in the same way: she had an allergy to “bright lights” and had been living in seclusion because of this allergy. She was depressed by her situation and so she took her own life.
Photosensitivity is included in the ACR’s list of diagnostic criteria. Estimates for the number of lupus patients who experience photosensitvity vary. Dr. Lenny Tuffanelli writes in Maryland Lupus Foundation newletter, “Thirty to forty percent of lupus patients are truly photosensitive” , though he cautions also that all people with lupus “may be harmed by excessive exposure”
Most of the estimates about occurrence are taken from the ACR, and implicit in these estimates are issues of reporting and interpretation. As with the larger problem of lupus diagnosis and treatment, the physician is dependent upon a patient’s impression, and the physician adds to the mix a clinical filter. It should not surprise anyone that the results of such a process are unreliable. For example – how precise is an estimate which ranges from thirty percent (Dr. Tuffanelli) to seventy-five percent (upper range of ACR estimate)? How can a doctor, or patient make a decision based on such vague numbers?
Dr. Victoria Werth, of the University of Pennsylvania Medical School, explains the process that causes a photosensitive reaction. Dr. Werth and her research team at Penn Medical School have “identified a variant of the human gene for tumor necrosis factor-alpha as a cause of photosensitivity in lupus.” Dr. Werth believes that identifying the gene variant that causes photosensitivity can help doctors to identify people who are likely to get lupus and can also contribute to an understanding of why the disease develops.
Dr. Werth discovered that in a those lupus patients who have one or two copies of the variant gene, exposure to sunlight stimulates the gene and subsequently the skin cells to undergo apoptosis (cell death). The occurrence of cell death is then a trigger for immune system activation.
The photosensitivity of lupus patients ( and of others who have diseases the induce photosensitivity) has a pervasive effect on lifestyle. Blithe pronouncements about the manageability of the condition with the use of sunscreens are ill advised. For one thing, sunscreens can be treacherous. My last experiment with one that I bought in Walgreens caused my face to swell so that I looked as though I was suffering from dropsy. Not only did my face swell, but my whole system was put into overdrive and I was ill for about a week.
One well-intentioned site recommends patch testing a new product. Patch test with extreme caution and maybe even medical supervision. I patch tested my new sunscreen twice, once on the inside of my arm and once on the outside. I waited at least 12 hours between tests and another twenty four before putting the lotion (liberally) on my face. Approximately eighteen hours after the last application I started to scratch. First the chin, then the arm. One side of the arm never reacted and the second only mildly.
Not only can sunscreens be harmful, but they are only partially effective. Sunscreen, long sleeves and a hat – all together are helpful. But this get up doesn’t mean its safe to wander around in full sun on a summer afternoon bathed in UV radiation.
I generally do not expect people to make exceptions for me or put themselves out, whether because of lupus or any other problem I have. However, I think that so many people have an issue with UV radiation (not just those who have lupus) that simple structural modifications can be routinized. Inexpensive filters can be placed over florescent lights, for example. Certainly in a medical setting this should be mandatory.