On the 10th "anniversary" of my MRKH diagnosis, I'll be running the Richmond Runfest Half Marathon to raise MRKH awareness, and funds for the Center for Young Women's Health at Boston Children's Hospital.
A bit about MRKH: MRKH is a rare (but not that rare) condition that affects about 1 in 5,000 women. Women with MRKH are born with normal ovaries and fallopian tubes, but with an absent or underdeveloped uterus, cervix and vagina. MRKH is usually diagnosed in adolescence when a young woman seeks medical advice due to not having a period. Women with MRKH cannot carry a pregnancy, but if they choose to, can create a "normal" length vagina with dilators or surgery. MRKH can also be associated with hearing difficulties, skeletal abnormalities or kidney problems.
What's my story?
Here's a link to my first blog post - a written version of the talk I gave at Boston Children's Hospital's 11th annual MRKH conference earlier this year.
Where will the funds go?
The funds will contribute to the continued provision of fantastic resources and support for women with MRKH and their families offered by the Center for Young Women's Health at Boston Chidren's Hospital.
What do they do?
- Provide expert medical care to women with MRKH
- Provide valuable and widely accessible MRKH resources to patients, families and healthcare providers
- Run fortnightly online support group chats for young women with MRKH. They also run a monthly chat for parents. The chats are moderated by a clinical nurse specialist and open to people all over the world
- Host annual MRKH conferences for patients and families, which are also attended by people from all over the world. The conferences give families the opportunity to learn about the medical aspects of MRKH from a leading expert in paediatric and adolescent gynaecology, listen to speakers share their stories about MRKH, participate in support groups, and meet other young women with MRKH in a safe & supportive environment. Those relationships continue long after the conference ends.
Lastly, anyone who knew me before I moved to London will know that the thought of running for 10 minutes during hockey pre-season training used to be daunting, so trust me when I say that running my first half marathon will be both a challenge and an achievement! Cheesy as it may sound, if there's one thing that will keep my legs moving for 21km, it's the passion I feel about raising awareness of MRKH, and the hope that some 16 year old girl may come across this page or my blog and perhaps feel a bit less lonely and find some helpful information and support.
Any donations would be greatly appreciated.
Thanks so much!
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