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Update on Medical Research Studies
Keep checking back for upcoming news regarding new partnerships and possible ways you can move research forward. Last week I asked members of the BYRMKH Facebook site, “What would you like to learn in Medical Research studies?"
Here are your responses:
I'd like to know if this is just random or if it's a birth defect that I can pass on to my daughters, and if any symptoms exist besides lack of reproductive organs and stuff.
Is there a connection/link to bone problems i.e. hips, pelvis, back etc. or to kidney problems? These things appear to be a common problem amongst MRKH ladies (from what I've read and know from my daughter) but it would be nice to have official medical confirmation so that GPs/PCPs can better help with these symptoms.
I second the bones part. Also are there any hearing issues with these girls?
Is there an increased likelihood of cancer esp breast, female parts?
Outside of the psychological effects, are there neurological effects?
Are there any effects that show up later or get worse?
I communicated these questions to one of our Medical partners and they are taking these questions into consideration as they design their next grant to the NIH. We will continue to keep you posted, and look forward to hearing more of your questions and communicating them with the medical community.
Sharing Your Personal Medical History
This study is closed. Thank you all for participating in this important research. We will keep you posted about the results of the project.
Articles mentioning MRKH and/or BYMRKH
We are honored to announce that Online College.org (www.onlinecollege.org) has declared the Beautiful You MRKH Foundation, Inc. one of the top 20 successful nonprofits started by students! Congratulations to Christina Ruth and the entire BYMRKH organization on this honor. http://www.onlinecollege.org/2012/10/21/20-successful-nonprofits-started-students/
Dr. Quint talks about support for women with MRKH http://uofmhealthblogs.org/4843/support-for-women-with-mrkh/
Wyandotte's Miss Michigan, Jaclyn Schultz, is named the spokeswoman for the Beautiful You MRKH Foundation
Miss Michigan, Jaclyn Schultz, talks about life without a uterus. (Article and video with US News and World Report)
Miss Michigan, Jaclyn Schultz, shines spotlight on MRKH: (Article and video with Channel 7 news)
Co-founder, Christina Ruth, opens up about having MRKH; hoping to take away the shame and isolation for women with MRKH.
Co-founder, Christina Ruth, celebrates her birthday by raising awareness and donations for the Beautiful You MRKH Foundation. http://www.hcpress.com/things-to-know/asu-student-creates-co-founds-nonprofit-organization-beautiful-you-mrkh-foundation-to-launch-oct-9.html
From the Huffington Post
Egg Freezing No Longer 'Experimental,' But Don't Delay Conceiving, Physician Group Says
By LAURAN NEERGAARD 10/19/12 05:49 PM ET EDT [AP]
Sara Ruth raises over $1100 for BYMRKH
100 for BYMRKH by running her first 1/2 marathon! Thank you to everyone who made generous donations to her cause. This funding will allow Christina and Amy to travel to MRKH Day on May 11th in Ann Arbor, MI, and help underwrite the get together following the workshop, where we can mingle and relax socially. Check out her interview on our blog, The Empowerment of the Silent Sisterhood.
BYMRKH in the News
Ricki Lewis Interviews Amy Lossie for her blog: DNA Science Blog:
Genetics in context on using artificial vaginas for creating a neovagina
I’m old enough to remember textbooks and biology classes that defined being female as a “default option” in human development.
If the ambiguous sex organ precursors in an embryo “failed” to follow the coveted male route, we became female.
If the SRY gene “failed” to turn on, we became she.
I’d always thought this male-centric teaching of human sexual development disturbingly close to Genesis: “The Lord God fashioned into a woman the rib which He had taken from the man. The man said, ‘This is now bone of my bones And flesh of my flesh; She shall be called Woman, because she was taken out of Man.’”
Lost in the discussion was the paradox of the puny Y chromosome and its meager roster of genes compared to the X. So I was happy when discovery of the Wnt gene pathway to femaleness finally came along and validated my existence, beginning the elucidation of the complex gene cascades that sculpt a female reproductive tract.
Are you struggling with your diagnosis? Do you feel as if no one understands your pain, your conflicts, your questions? Do you need someone who will listen without judgment? The Good Hope Program may be the place for you. This confidential, individual Skype and/or telephone program matches you with a trusted MRKH Mentor who can help you to find the answers you seek during this difficult period. The MRKH Mentors! Program does not provide medical or psychological services.
Sign up for the Sister-to-Sister Mentoring Program firstname.lastname@example.org
Become a Sister-to-Sister Mentor! email@example.com