Help the development of a new study investigating decisions about pregnancy for lupus patients.

[Paul_Howard]

UCL are interested in investigating the reasons for some female ‪‎lupus‬ patients choosing not to have children and need your help to design the study.

If you are a female with lupus please spare a few minutes to look over their planned questionnaire and provide feedback by completing the online survey. Thank you.

surveymonkey.com/r/27WP223

[littleeffie]

Hi,

Did the survey and left comments as although I did persevere through the multiple miscarriages and managed to have four children over a number of years there were times when I thought of not continuing to try pregnancy purely down to initial miscarriages which was not covered in their questions and think should be as a very miserable and life changing side of Lupus.

[Paul_Howard Partner LUPUS UK in reply to littleeffie]

Thank you for taking the time to complete the survey.

[johare]

Felt that there should be questions regarding miscarriage. There are no questions for those who have children but had difficulty with conception or during the pregnancy. I say this many women may try but also take others experience into account. Many people are not diagnosed until later, they have by that time either failed to become pregnant, miscarried or had difficulty during pregnancy. All of these details reflect on others choices. I am lucky to have four children, however, I miscarried, had various problems during and after birth and did not know this was part of lupus as my diagnosis was late.

[Paul_Howard Partner LUPUS UK in reply to johare]

Hi johare, as the questionnaire mentions at the start, the study is only for people with lupus who have never been pregnant before to complete. Your points about difficulty with conception are really good feedback though - did you write these comments in your responses to the survey?

[johare in reply to Paul_Howard]

Yes they were in response to the survey. I also considered not continuing, but was lucky. I just felt that some may stop trying after hearing others stories. There may also be a large number of people with other associated autoimmune conditions who are misdiagnosed who also make this decision.