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Has anyone heard of fisheye syndrome/disorder as another part of lupus?

I have dry sticky eyes that constantly discharge ultra-fine (like cobweb strands) transparent, sticky stuff. It is lots of long strands, it doesn't break, you can't cut it, you can't see it but it feels like gritty hairs stuck to your face, in your hair, on your shoulders, in your mouth, down your throat, in your lungs. I now have severe COPD (diagnosed at Papworth 3/9/12). As an added bonus, you can't wash it off and nothing seems to dissolve it. But guess the best bit - you just have to learn to live with it! Help please, does anyone know of anything I can do to feel clean and to stop me disappearing under a pile of this stuff both inside and out? It's really getting me down.

3 Replies

Jayniey - that sounds absolutely awful. I'm really sorry I can't help you as I hadn't heard of this condition until just now. You poor thing. Hopefully someone here will have an idea.


I am so sorry not heard of this is all my 20+ years with Lupus,hope some one will know



It could be considered a tangent of Lupus as it is generally considered a metabolism disorder - which Lupus affects metabolism.

I hope you and your doctors find a tolerable solution.

Be well. Carry on strong.


FED = Fish Eye Disease

A familial disorder involving corneal opacities and low HDL cholesterol levels.

It occurs as a result of an enzyme (lecithin:cholesterol acyltransferase) deficiency.

Lecithin is found in all living cells. The highest amount of lecithin is found in the brain, heart, liver, and kidney. Lecithin can also be prepared from soybeans. It is commonly used as a supplement for atherosclerosis (hardening and narrowing of the arteries), Alzheimer's disease, depression, dementia, gallbladder disease, gallstones, liver disease, headache, multiple sclerosis, acne (pimples), psoriasis, and high cholesterol. Its use in the treatment of depression, dementia, gallbladder disease, headache, multiple sclerosis, and psoriasis may not be effective. Lecithin that is available at health food stores is usually a combination of fats (including phosphatidylcholine), oil, and carbohydrates.

Other names for lecithin include: phosphatidylcholine, phosphatidylethanolamine, phosphatidylinositol, PC-55, ethanolamine, and serine.

Ask your doctor, nurse, or pharmacist if you need more information.

Do not take any OverTheCounter supplements without your doctor/s permission.