Dear lupies, sorry if this message will be long long long.
After my diagnosis i have been struggling not to let lupus win in any way in my life. It's already affecting me so much i will at least fight to live my life to the core. Too many times people with diseases or who are going through pain and sufferings are pitied as if their life is nothing but a "half life", as if they have no more chance to be happy. but WE do have an opportunity: "I will not live things on the surface and sickness somehow can push me deep" (F O'Connor) . This is what i decided to fight for in my private and public life. My music turned out to be an excellent way to share this message with many people. i guess some of you remember my song for the Terry Fox foundation supporting cancer research. I actually remember some of you being comfused by a person with lupus supporting cancer research, an i totally understand, but i would like to raise some awareness not just about a particular disease, but to communicate that NO ONE (people suffering because of lupus, cancer, genetic rare diseases, mental diseases, alcoholism.....) should never be deprived of his possibility and right TO HOPE:
On december i organied with some friends a three day show (concerts, classical music and plays) to support a pediatric hospital here in italy . it was the occasion to talk about so many difficult situations, including lupus, and LIVE TOGETHER an experience of art, efforts and hope. It has been an unexpected success and we decided that our effort will not stop with this "marathon" but will continue in a 365 day association which will promote manifestations, shows, campaigns to support econimically hospitals or research but also communicate that there's no evil, pain or illness strong enough to win our hope.
A) you can participate sending me your opinions and suggestions any time you want!!!!!!!!!!!!!!!!! (firstname.lastname@example.org)
B) our next project will be a video including experiences of people suffering because of a disease but who would like to share their strenght and desire to live every single day. You can write to me if you want because an experience about lupu will for sure be in the list ( there are so many people who don't know what it is either!)
The mother of a 3 year old girl with a rare genetic disease told me: " Sufference gives you so many dreadful things, but it also gives you sensitivity and courage. I need to make people aware of my doughter's sensitivity and courage".
take care the all of you
let me know