tell us your experiences

[henrietta]

Dear fellow sufferers of Lupus,

I am a student currently studying Psychology and Counselling at Roehampton University. I am presently conducting a study, concerning women living with lupus as part of a third year undergraduate research project. I am also a sufferer of lupus and have been since 2004.

I am looking for participants who have been diagnosed with either Systemic Lupus Erythematosus, or Discoid Lupus Erythematosus, and are willing to talk about their experiences and what life has been like whilst living with the disease. I would also like to get other perspectives on the emotions are involved

The areas that the study will cover will include; individual diagnosis, affects of lupus on everyday life, and advice regarding the availability of support.

All interviews will be on a one to one basis, lasting between 45 mins and 1 hour (approx). The interview will be recorded on tape, transcribed, and then analysed. Confidentiality is assured as any identifying details of participants and any others mentioned throughout the interview process, will be changed or represented by initials only during transcription. The tapes used will only be heard by my supervisor, Jean O?Callaghan, and me. The tapes will be destroyed at the end of the study period.

however in the event that you would like to give your opinions and i can not get to you (if you live too far away) i will arange to send you the questions via email, and you can post them back to me. The confidentiality terms also apply to this method.
Or skype can also be used.(that is if you have a web cam or microphone.

If you have any interest in taking part in this study, or have any queries please feel free to contact me.

Contact details:
Henrietta Haizel (researcher):

henri_haizel@hotmail.com

[sweetpea_uk]

Hello,
Charmbraclet here!! Well as a graduate of a BA (Hons)Psychology i am aware of what goes into completing research and trying to obtain participants for your studies. Therefore i would be more than happy to help you in your research. If you send me some background about what you intend to do and send me some questionnaires i will gladly fill them in!!! My e-mail address is: sweetpea_uk@hotmail.com

I was diagnosed SLE IN 1997 AT AGE 15 and do suffer with bouts of discord lupus. look forward to hearing from you.

bye bye

[henrietta]

thanks guys i will be emailing u soon,
charmbraclet, when did u graduate? it sound like u understand what i'm going through at the moment, - sleepless nights and all that.
where did u study??

teri - would u like to participate?

[Joandublin]

Hi henrietta.
Not sure if your study is limited to particular locations but I would be willing to participate if it helps anything towards more awareness of this disease. I live in Ireland.
Joan

[henrietta]

hi jaon that would be fantasic, even though u live in irland u can still take part via email if you wish, my email addres is henri_haizel@hotmail.com
email me so i can have your email address then i can send u alll the back ground information and u can decide if u wanna take part
thank you again

[SusieBB]

Wow, Henrietta...most definitely. You can count me in too!!! Sounds like a terrific venture. Hugs.

Love -- SusieBB

[RoseanneMcLean]

Sounds like a good study - well done you for taking on a subject so close to you.
I live in London, but if I can be a part of the study by answering questions by email, do let me know.
I was diagnosed just over four years ago at the start of university - I lived in Liverpool and everytime I was in hospital I was swamped by hoards of students - I think they found my case unusual - so I am pretty used to answering questions!

Hope I can help, and good luck,

RM.

[wendiem]

Hi,
My name is wendie . I was diagnosed with lupus is 2001. The diagnosis was made after i had my son and suffered 3 miscarriages. They could not figure out what was wrong , and then my doc grasping at straws sent me to a rheumatologist. By then I had hashimotos thyroiditis, antiphospholipid syndrome and raynauds.
It all started when i was 18 and in nursing school. my instructor was standing next to me in the school cafeteria and saw that my nails were blue. I went to a rheumatologist then and was just being watched. My and titer was 1in 80. not very high. So i left it go until i was 26. now my titer at 31 y/o is 1 in 1280. to put it bluntly i feel like c*#p. My husband tries to be understanding , but wants to know why i sleep on the couch and sleep all day. Here is the answer, i cannot sleep at night, so to keep from waking him ,i stay on the sofa, and the disease sometimes makes me so tired i just wanna die! I am so embarrassed that i have to miss work, and my kids sometimed don't understand why mommy has to sleep or stay out of the sun. Also others put ideas into my husband's head about what they have "read" about lupus and that lupus patients live active lives and why are you just laying around? How do you answer that? HELP!
wendie