View Full Version : Research study for mothers with lupus
09-12-2006, 03:55 PM
Researchers from the University of New Mexico are seeking participants for a study exploring the impact of symptoms, such as pain and fatigue, on parenting mothers with systemic lupus erythematosus. Mothers who have been diagnosed with lupus who have children between the ages of 0-18 years living in the home may be eligible to participate by completing a packet of questionnaires online. A small gift card is provided as thanks to particpants who complete the questionnaires. For more information about the study and the eligibility requirements please contact.
Cindy Mendelson PhD, RN at firstname.lastname@example.org
09-15-2006, 05:17 PM
What about those of us that cannot have children because of Lupus? That was a huge impact for me and still is while my biological clock ticks away. Part of the reason I cannot is because of the physical demands.
If not this time, I would love to answer any questions now or in the future about NOT being able to be a mother.
09-15-2006, 05:28 PM
Lupus affects people in so many ways. The more I try to understand the impact of this illness the more I become aware of the many ways that it impacts upon peoples lives. I'm sorry that you will not be able to participate in this current study, but I hope you will consider other opportunities in the future. The only way to change the level of understanding about daily life with this illness is for people to share their experiences with each other, the general public and with researchers who have the ability to reach the health care community.
My thoughts are with you,
09-16-2006, 05:39 AM
How's it going? Are you getting good responses?
09-16-2006, 05:55 AM
It's going quite slowly I was hoping more women would want to participate. As a member on this forum said in response to your intial poll, the only way to increase awareness is for folks to participate. I do believe that my work is starting to have an impact, I was interviewed for a story in Lupus Now and for a few other new stories. I will be presenting a paper based on my work at the scientific meetings of the Association for Rheumatology Health Professionals in November. I'm hopeful that folks will take a few minutes over the weekend and contact me. We know so little about the impact of this illness on parenting, and I believe that this study will help shed some light on these very important issues. If people are skeptical about me, and I can understand concern about sharing information with a stranger, I have attached the link to my University web page, it gives some information about my work.
I very much appreciate your willingness to allow me to post on your site.
All the best,
09-16-2006, 06:44 AM
I AM the MALE who contacted you, I hope though some have called me a MOTHER***** before ...LOL :lol: I know you are looking for mothers with LUPUS .....but it would be nice if a male could get your perspective on this incidious disease.
THANK YOU FOR WHAT YOU ARE DOING and PLEAE KEEP COMIG BACK !
09-16-2006, 07:43 AM
I think there are many of us who would like to help, but many of us may have concurrent medical problems besides the lupus, such as RA, sjogrens, diabetes, Reynauds, fibromyalgia, CFIDS,CREST syndrome, etc., so it's hard even for us to tell whether the pain and fatigue are directly related to the lupus or the other medical conditions, or a combination of everything. Plus for some of us the treatments themselves, such as cytoxan, cause severe fatigue. So I wasn't sure if people with more than one medical condition would throw off your results - I know this is a factor in some medical research.
09-16-2006, 07:53 AM
Women who have multiple illnesses may still participate in the study. The only requirement is that you have a diagnosis of lupus and kids living at home. There will be questions that ask you about how your lupus affects different aspects of your life. All that we ask is that you give us your perspective, the best you can about how the lupus affects your life. There is a place for open ended comments and this would be a good place to share that other illnesses may affect your symptoms.
From our perspective, multiple illnesses are often a part of the lupus experience, and it is important to not eliminate women because they have this additional burden.
09-16-2006, 09:10 AM
I have some Lupus sufferers in my local support group and I have forwarded the link on to them, hopefully you get a few more participants.
09-16-2006, 09:18 AM
Thank you Jen,
I am most appreciative
09-17-2006, 07:45 PM
I think that you will get more responses as more members become aware of your research. I went to your web site and you look sooooo familiar to me. But, it just may be the kind eyes :lol:
I wish you the very best in your research and I am sure that you will get more responses!
Peace and Blessings