As some of you could see, I have an opportunity to be part of a research project for women with MRKH. The researchers would take some blood samples from me and any of my immediate family members that would like to participate to study our DNA. They want to try to find the cause of MRKH and IF it could be prevented. I wasn’t specially selected, I volunteered. I am part of a wonderful “Sisterhood of Warriors”, if you would, of women from literally all across the world that have been blessed with this. I honestly didn’t know it existed until I was looking up more on the syndrome myself and I saw all these women. I couldn’t tell you how excited I was to FINALLY have a group of people that understood. I know I have my friends and family that I could talk to here and they have been more than supportive, but it’s just different when there are people that are actually going through the same feelings and emotions.
I am part of the Beautiful You MRKH Foundation. It is a wonderful organization that encourages us lucky ladies to be proud of ourselves and to remind us how beautiful we are even with MRKH. The one thing I really love and feel like I should also be doing, is the foundation encourages us to talk about the syndrome and bring awareness to it. I would LOVE to tell someone I have MRKH and not have to explain it. I want them just to say, “Oh, so you were born without the proper parts of the reproductive system?” Hell yea I was and I rock it! I wouldn’t actually say that, but I would be screaming it in my head. Every doctor appointment and trip to the ER, “Is there any chance that you may be pregnant?” Of course I could just say no and leave it at that. However, these are medical professionals. Why shouldn’t I tell them I have MRKH? Because then they question me as to what it is and I tell them. “Oh, I have never heard of that before,” is what they usually respond with. Who knows what happens after that conversation. Maybe they forget about it. But, maybe they don’t. Maybe they tell another co-worker who has never heard of it and so on. Maybe they both go home and research it. Then, maybe 2 years from my visit, another 17 year old girl comes in and has never had a period because she also has MRKH. Imagine how that little girl will feel when that doctor or nurse doesn’t have to question her about it because he or she already knows what it is.
That’s why I’m doing this. That’s what the Beautiful You MRKH Foundation is about. I encourage you all just to look at their page and see what they do. They have helped me be proud of myself. The foundation has proved to me that I am not alone in my feelings and that other women all across the world are affected by this. Maybe, one day, MRKH won’t be something women are afraid to talk about but instead, are proud to have been blessed with.
www.beautifulyoumrkh.org
I had to write a blog post on this fabulous post of yours! GREAT JOB!! Amy C. Lossie, President and CEO, Beautiful You MRKH Foundation.
ReplyDeleteHere's a link: http://travelingeneticist.com/2015/02/27/beautiful-you-mrkh-foundation/
Thank you so much, Amy!!
ReplyDeleteThank you so much, Amy!!
ReplyDeleteWhenever you experience tough times, you will always search for answers. And when you do get an answer, you will remember it as a very special or a very real experience in life.
ReplyDeleteThose special moments are truly God given and are meant to be shared. Your real life experience could be a shining light for others. Please share it with us on www.merakyahoga.com