Lupus Documentary

[spazangelo]

Hi,

I have had lupus for most of my life (I'm 22) and I just recently began shooting a documentary on lupus and its impact on lives as well as incorporating the opinions of loved ones and of rheumatologists, dermatologists etc. Anyway, I am looking anyone under 22 that would be interested in being interviewed. I am usually in Los Angeles and London depending, so anyone in the U.S or U.K is fine. Also, I'm looking for anyone who has lost a loved one to lupus and would like to share their story.

If you are interested, please reply or alternatively, email me at blaccxroze@yahoo.com

Thanks,
DAPHNE

[zara]

What a great idea. Good luck with your project. I think this is an excellent way to get the word out about this disease. :)

[jude mack]

Hi I think this is a great project and I wish you luck.

Take Care
Jude:)

[Dee Fellows]

Could you please let us know when you finish and how we can watch it? I think its a brilliant idea.

[spazangelo]

Thanks to you all!! :)

I think it's about time lupus got out there - I've encountered far too much ignorance from people (doctors included) on living with such an unpredictable and extremely exhausting illness and I think some understanding needs to finally come through.

How long have you all had lupus?

We should be done with the doc. hopefully by March 07 b/c the London filming won't start til January.

daphne

[krazy]

Hi Daphne,
I hope we get to see your documentary in Australia.
Best wishes and good luck Kay

[Clare.T]

Hi Daphne

I have had lupus for 34 years, but relatively not at all serious. One of the big problems is how lupus affects people so differently it's almost as if we each had our own version.

Another is that it has no universally dramatic features unlike breast or prostate cancer or AIDs, not 'sexy' at all.

Do you know how you are going to distribute it and do you have a sponsor ?
Good effort !

Good luck!

Clare

[Dee Fellows]

Daphne
I have had SLE for almost 18 years now. From mild to life threatning. I am SO excited that you are doing this. There is not nearly enough public awareness. I hope your doc. is a HUGE success.
Best of luck to you and strength to see it through to the end.
Dee

[spazangelo]

Clare,

I know what you mean - lupus is definitely complex in how it affects people and I think that's one reason why it's so difficult to really get to know more about whatever its cause may be.

34 years? That's quite a while but I'm glad its not all that serious. You're in Surrey - would you be interested in being interviewed? We had been looking for a woman who has had it 15+ and we've found quite a few but they agree then they pull out then they agree etc. I'd love to include you, if you're comfortable with it (no worries if not).

It's funny you mention cancer and AIDS - when I first wrote the proposal for the doc. I put that due to greater awareness, cancer patients (after chemo) can nowadays walk down the street, bald, and most people will express sympathy. However, a lupus patient with the malar rash will more than likely get ridiculed but if there was more awareness, then maybe soon enough, the reaction of most of the public can also make that turn to sympathy. But yeah, sexy lupus is not!!

As for distribution - my best friend, who's helping me - she's a film graduate from University of S.California (great school!) and has a lot of contacts and they're willing to help. But, of course, we're still trying to work on that too.

Daphne

[spazangelo]

Dee,

Thanks for the support - I know I sound naive saying this but I really hope the doc. makes a difference.

Sorry you've had to suffer so long - lupus really can be a pain in all the wrong places, literally and figuratively.

I'm getting a great deal of help from wonderful doctors (Dr. Robert Lahita in the U.S and Dr. Graham Hughes in the U.K) and all of you who believe it's time lupus came out to the world.

I really appreacite the support! :)

Daphne

[spazangelo]

By the way, are there any lupus facts/stats that any of you think should be mentioned? The beginning of the doc. is a few facts that fade in then out, no audio, and I have so many but I need to cut it down to maybe 5 that really stand out. Any suggestions??

Thanks;)

Daphne

[oldschool64]

8) I think it is a very cool idea about your docum.,ive had lupus for 12yrs.and counting,im 42 but i know that i had it way before i was DX cause i felt realy bad at times.Iwas dx in 1994 and i had no clue what lupus was or what to exspect,then lupus and it's evilness took hold and pourd it's wrath on me.Once the inflamation was so bad,my chest muscles swelled so much that it smuthered my heart to a stop[yes]i died for 2min they brought me back to life and put me in ICU and i woke up 3days later,what a trip..Then one time i had developed a bad sore on my rite pointer finger,it turned out to be raynauds and i had to have part of my finger amputaded,another time i had so much pain in my legs from the joints and muscles i passed out.People need to know what we go through cause lupus is a life sentence of pain and misseryand physical challenges.

[chantal]

great idea !!! good luck i cant wait to see it :p

[Joandublin]

Hi Daphne:)

I think it would be useful to mention the prevalence of Lupus and compare it to the prevalence of some of the better known diseases like MS for example. Thats usually an eye opener for people:)

Cheers
Joan