4 ms·
The following video conference with Robert Lahita is one of the more substantive discussions on the understanding of systemic lupus erythematosus (SLE) that I'v
by aksss 3y ago
The following video conference with Robert Lahita is one of the more substantive discussions on the understanding of systemic lupus erythematosus (SLE) that I've seen in a while.
https://youtu.be/FYYfHWR7WwY https://youtu.be/FYYfHWR7WwY
In his presentation (~36:20) he has a slide stating that *67% of those with SLE have psychological or psychiatric issues*, 8-20% seizures, 3-16% cranial neuropathy. Of course, "psychological or psychiatric" could be depression and anxiety, and I don't mean to minimize those issues at all, but cognitive dysfunction is a bear in the room for all SLE patients and probably far more serious if one is unlucky enough to have that symptom manifest (most do not, as I understand it).
I will say that at disease onset and adjusting to having a disease, depression is common. It's life-changing, so to be expected. Ongoing, I think it's a constant battle as you're constantly reminded of limitations and pain is like an everyday companion that you learn to live with but sometimes the mental load can get overwhelming, triggering episodic depression. I know this from personal experience, but also my exposure to others with SLE and MS. As you go, it can be hard to know whether some mental and attitudinal issues are related to SLE and its side effects or just aging (e.g. increased anxiety, timidity, depression, memory loss, mental fog, fatigue).
And speaking of mental load, blocking out chronic pain takes a lot of mental energy, which is a zero-sum game - it indirectly results in a decreased ability to focus, engage, etc.
Regarding other comments here:
1) There are well over 200 identified "autoimmune disorders", and any amount of research that's compelled by having one of them will reveal how much and ironically how little the scientific community knows about causes, dynamics, and treatments for autoimmune disorders. In fact, the immune system itself is monstrously complex and it's amazing how mysterious it remains considering how much really is known about its mechanics.
2) Animal models for SLE (and I assume most autoimmune disorders of the same severity - not talking allergies and asthma here) are traditionally hard to create and have faith in, though this has been getting better. It makes sense that this has been challenging considering we don't know specific causes.
3) Pathogenesis - Environment (UV light, drugs, viruses, pollutants, etc.), hormones/epigenetics, genetics, stochastic factors (chance), comorbidities (e.g. hypertension), all seem to play a role, and none seem - on their own - to be good predictors of risk. It's thought that there's some "trigger" in the sense that all these factors reach some threshold that cause breakage in the system at a point in time and BAM! now you have Lupus or MS, for example. So it could be that you get infected with something and experience an extraordinary level of physical and mental stress at the same time, and it tips the scales. But on their own neither of these factors would be causal, and even together these wouldn't necessarily have the same impact on you at a different time in life or affect another the same way. Clearly there are missing links here.