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View Full Version : What's Your Lupus Story?



mazfox
11-16-2010, 02:04 PM
Hi everyone! I have had Lupus for 8 years now and I have been through a lot of treatment to get it into remission. My kidneys nearly failed, my lungs nearly stopped, I had blood clots nearly ending up at my brain, Lupus Fog, terrible joints, fatigue, and general depression. I had several treatments of chemotherapy back when things were really bad. I was only 20 when I found out and trying to graduate my undergraduate degree in my final year. I was in America when I got diagnosed and on an internship. My life since then has never been the same, and I have braved near death twice.

I had no idea what Lupus was when I got the news that I had it. It took countless hours of research to find out about it and even then I had to get information from the internet (which consequently was mainly very scary and negative to read, no to mention clinical).

So, I have met an old school friend recently and found out that she too has suffered with it for the past four years and may need chemo like I went though. She said she too didn't like to read the information on the internet because of all the negatives it brought up. We both agreed that there is not really a book out there that talks of Lupus from a sufferers perspective. We both decided to write our own book and collaborate a lot of our diary entries and our stories and our fight to combat it.

What I would love to do is get a collaboration of people's stories who have had Lupus or know of anyone close to them with Lupus, and what their history entails. For example, when they first found out? How it affected/affects them? What treatments were they given? What problems did you go through? Did you have any relapse? How many times were you in hospital? What is your personal fight/story?

I would love to get some together and have a real book full of real people's experiences.

If you are someone who would like to share their story, then get in touch with me. I will gladly give my email to anyone who is genuinely interested. I have started writing my own story and I would love to share it with you too.

Get in touch! You are not alone!

Marian Mantovani