Diagnosis - Rare C1q esterase inhibitor deficiency

My rheumatologist recently diagnosed me with this and told me it is a real and rare autoimmune disease. I am waiting for an appointment with a hematologist for treatment because my rheumatologist says she is not qualified to treat me. I cannot find anything to learn more about this in laymen's terms. My rheumy could only tell me it could be the cause of my joint pain, headaches, trouble swallowing, dry eyes and mouth, ibs, and muscle pain. She said it would be hard to find anything to read about this disease as it is very rare. I'm asking if someone can help me find information or explain it to me very simply. Thanks.

I just got back from a doctor's appointment and I have been puzzling doctors and hospitals for about 7-8 months now. I have been horribly sick and all my tests come back negative (cat scans, ultrasounds, blood tests, colonoscopies), but my internal medicine doctor keeps seeing me and is trying more and more tests. I just had the blood test for the c1q esterase inhibitor. He says the condition he thinks I have is hereditary (which would explain a lot of what has gone on with my mother). I am going to try to find more info too. If I find something, I will try to post it here. The only thing he could tell me is that its very rare and it could cause the female problems I have, the hormone problems, and the digestive problems. Sorry I couldn't be more helpful. He did say it was extremely rare and that if I did have it, I would be the only case he would see in his lifetime and that most doctors don't see it ever.