The Lupus Research Institute

[VidenTheColdOne]

Some of you may know that recently my mom has been having some medical problems. She just had her lower leg amputated due to Peripheral Artery Disease caused by her Lupus. She also recently had a stroke. She is doing better now, but because of her Lupus she is at a higher risk of stroke, heart attack, and a variety of other maladies.

Unfortunately Lupus is not a disease that is as openly promoted, or spoken about such as a disease like breast cancer. It is a very serious illness, and should be given the same recognition. I found an organization that is doing research towards a cure, or at least a treatment for lupus. They offer several ways to make donations, and to make others aware of this serious conditions, such as wristbands. It would be fantastic if you could give this site a glance, and if you are interested, or if like myself, you have someone in your family who suffers from lupus, you could make a donation, or buy a wristband to promote lupus awareness.

http://www.lupusresearchinstitute.org/index.php

If anybody here has lupus, or knows somebody who does, i would like to invite you to share you/their story. Its important we spread awareness about this disease so we can get closer to a cure.

[Govinda]

My mum has Lupus. She hates the LupusUK, the British version of that, because it's basically a moneyed tea party.

Her lupus is interesting though. While she has the mutated, DNA-eating immune system, hers is keeping quiet. It's not doing anything at all. The last thing it ate was her teeth, but that was about four years ago. Since then, it's just been dormant, which doctors find very interesting; the lupus immune system is so mental that it can destroy AIDS, but you can't put the blood into people, because then they get lupus instead of AIDS, and the AIDS might not go away completely.

Lupus sucks balls. Did you know that most lupus women, if they get pregnant, will have their unborn baby attacked by their own immune system? It's mostly only women that get it. It's mildly hereditary.

It's had a huge effect on my life. My mum's lupus was triggered almost ten years ago, when I was nine. My dad was being a twat. The trouble with lupus is that there are no outward symptoms really, apart from a minor butterfly rash in some patients. All doctors have to go on as to how much pain the patient is in, where that pain is, etc., is the patient's word, which leads to a lot of accusations of hypochondria even if the patients ANA (lupus test thing) comes back positive. So, my mum got ill when I was 9. My dad didn't believe she was sick. I did, because I was a kid and I lived with her. I looked after her through the start of it, and my brother too. I did that for years.

Back to the trouble with hypochondria - my mother's lupus appeared so severe on the pain front that the doctors said it couldn't be lupus. They pinned her with fybromialgia, even Multiple Sclerosis (scary scary scary), and ran the ANA over and again. Only the ANA came back positive, so they stopped believing that she was really in that much pain, that she was really that numb, that she was really taking her antiflams and immunosuppressants and being a good patient. They just dismissed her.

About 6 years after her initial diagnosis (four years of which were accusations of hypochondria and symptomm searching) they found out that she'd been walking around with a DISLOCATED NECK since a few months after her inital diagnosis. They didn't think to check because she had lupus, and 'it's just pain'. ****ing idiot doctors.

She's doing well now though. Only on meds for her arthritis and her stomach (got damaged after lupus went for it a while ago).

I hope they find a cure. I daresay my mum's lupus is going to wake up at some point, I dread the day.

Hope your mum's doing well too, Viden. It's great that you're raising awareness.