Sun exposure can be one of the most troubling concerns when it comes to the treatment and management of Lupus. This is not an opinion statement, but a reworded statement from many official research-based medical websites. When discussing the impact of sun exposure to a person living with Lupus, there are many warnings. Descriptions of the symptoms triggered by sunlight are many, and often listed. Not that anyone with Lupus needs to be told. No doubt they can recall the last time they made the error of standing up to the sun. But, as I get older, as I mature more, I am really starting to build a list of questions about this. I am not doubting the authenticity of this information, I have lived it, I know it to be true. Rather, I want to know what, which, why and to what extent?
What is sun sensitivity?
As a disease, Lupus is synonymous with sun sensitivity. But, what does that mean? Well, I am going to tell you that I cannot tell you much. Sure, I could cut and paste things from medical journals and official Lupus pages. Or I can provide you links to the UK Lupus page or the Lupus Foundation of USA pages specifically addressing this topic. I encourage you to follow these links and read the correct information from official sources. My effort here is to introduce you to this information, if you did not already know it, and familiarise you with the terms I have heard people use when referring to this condition. Not that it is any whizz-bang label or name, the way in which the skin of a person with Lupus reacts when exposed to light and the sun is known as ‘photosensitivity’.
The question of ‘which’ is in reference to the disease. As a young person, newly diagnosed with Lupus, learning about my disease was not as thorough as it could have been. Mostly because I was ‘at that age’ and just was not open to learning about my diagnosis, or those similar. I am, or was at that time, a person with Systemic Lupus Erythematosus. One type of Lupus. There are a few types of Lupus. I was diagnosed with Systemic Lupus Erythematosus (SLE), and later developed Lupus Cerebritis as well. Other types include: Discoid (or Cutaneous), Drug-Induced, Neonatal and CNS Lupus. Lupus Cerebritis (CNS Lupus) is a symptom of SLE, in which one of the major systems affected is the Central Nervous System (CNS). Now, my question is this: which types of Lupus are photosensitive? From what I can find, all of them are. Discoid Lupus essentially is limited to the skin and, one might presume, would have more trouble with photosensitivity due to their skin sensitivity.
Why Sun Exposure?
To be honest, I do not know. Yes, once more, I could look online at all of the websites, and turn to my books and educate myself. I mean, we all could do that. We could also look internally to what our common sense suggests to us. That would look like a simple calculation where, if A + B = C then we could say:
A: Lupus is confusing cells, making the immune system attack its’ own cells
B: Sun exposure may temporarily make exposed cells seem different
C: I guess you can see where this is going
The strange thing about this is that…it is the Lupus reaction of rashes, burns, lesions, joint pain and fatigue, that changes the cells in the body. But, that is another rabbit hole for another day.
To What Extent?
This is the most important thing I think about, when I think of photosensitivity, or the way sun exposure impacts the skin of a Lupus-inflicted person is WTF? How can we know what is going on and how best to avoid it? As I have mentioned a few times above, these are questions you can answer online. But, I know how hard it can be to get the right information. You need to know the right questions to ask, the right links to follow and, most importantly, you need to be able to read and understand the information you are being given. I am not going to be so unfair as to leave you in the lurch completely. So below I have taken some of the more important things I have wondered and tried to abbreviate the found knowledge down for you below.
What part of the sun affects Lupus most?
In sun light is a component known as Ultraviolet light (UV). This is a type of radiation, and there are three known types: UVA, UVB and UVC. According to research, UVB is the biggest problem, but UVA can also contribute. As a rule, it is wise to limit all UV exposure and limit exposure of the skin to sun light and indoor ultraviolet lamps.
The above paragraph comes from Healthline.com
Can it do permanent damage?
It appears so. Many sources seem to say that, yes you can. It is hard to find accurate and targeted information regarding this topic as I, an Australian, am considered to be more interested in skin cancer due to skin exposure. My internet researches, both in public forums and in private research institutes, all steer me to skin cancer concerns and these are not relating to Lupus. My location and search ratios are against me in this one.
Is there any relationship between Lupus photosensitivity and skin cancer?
Again, I cannot find an answer for this. I would love to let you know or direct you to someone who could convince anything about this. At this point, I have not found an answer to this. That is not to say there is no clear answer, or that it is not out there. If you know this, I would love to hear from you.