Something that gives me purpose with my rare illnesses is taking part in surveys or research studies to help make change. I wanted to share a few resources for those of you that might be interested in participating, but didn't know where to find or what was out there.
I completed this one a couple months ago and would urge anyone who who qualifies to do this one 👇
"Despite the fact that many patients with Ehlers Danlos Syndrome are women, the medical literature includes few reports on obstetric and gynecologic conditions that may be linked with the disease. According to some reports, obstetric complications associated with EDS may include infertility, ectopic pregnancy, spontaneous abortions, preterm delivery, postpartum hemorrhage, and abnormal wound healing. Aortic dissection and uterine rupture in pregnancy have also been described in vascular-type EDS. From a gynecologic perspective, abnormal uterine bleeding, painful periods, pain with intercourse, incontinence, and pelvic organ prolapse have all been linked with EDS. No studies have addressed gynecologic symptom severity and impact on quality of life in women with EDS. The objective of this study is to survey 400 women who have been formally diagnosed with Ehlers Danlos Syndrome, in order to clarify the prevalence of obstetric and gynecologic conditions in this patient group and to understand the impact these conditions may have on quality of life."
Just did this one 👇
This is an awesome website that sends you an email when there is a survey available and if you end up qualifying, you usually get a gift card 👇
Lastly, I've mentioned before that the Ehlers-Danlos Society always includes what they have posted so make sure you fill out their Global Registry to get notifications 👇
Here's their list of surveys:
Do you know any other surveys or studies currently seeking participants or websites that you'd recommend to find them?
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