Specific Project Info

Approximately 1 in 5000 women are born with Mayer-Rokitansky-Kuster-Hauser Syndrome (MRKH).  MRKH is a failure of the reproductive organs to develop properly.  This causes various reproductive organs to be malformed or missing completely.  Women with MRKH can have a missing or partial uterus, missing or partial fallopian tubes, and the syndrome may cause a shortened vaginal tunnel.  This syndrome may also cause skeletal deformities, missing or deformed kidneys, hearing impairments, or heart defects.  Women with MRKH are unique in how the syndrome causes differences in their body, but we all share similar stories, feelings, and experiences.

The founder of this project, Kristen Peterson, was diagnosed with this syndrome at 16.  For ten years, she struggled with the feelings of shame, isolation, and heartache the syndrome caused her.  Unaware that she was not a rare case, she felt as if she was the only one dealing with the syndrome.  Then, just before her 26th birthday, she discovered an amazing group of women online who all shared the same condition!  Her world was changed, as she realized that there were women all over the world who shared a similar story to hers.  She joined an incredible sisterhood of women, who have forever changed her life in the most positive of ways.

Kristen started this project to bring this sisterhood closer together.  So many women feel isolated still, despite the amazing online community that so many MRKH organizations have formed.  So many women have stories to share, words of wisdom to inspire, and hope to instill in others.

So, what exactly is the project?


A notebook is traveling all over the world, from MRKH sister to MRKH sister. 
Each woman gets one page in the notebook, to share whatever she'd like.  A story, a poem, a drawing, a favorite quote... anything she'd like to share with those living with the same condition as her. 
Each woman who has the book might take pictures with it representing where the book is, or decorate the outside of the book in some way.  The notebook and it's pages is a representation of those who are writing it... a strong, resilient, and brave group of women who have been given a life-changing diagnosis and not let it ruin them.
Not only will each woman get a chance to share something of her own in the book, but she will have the chance to go back and see what others have shared. 

The purpose of the Sisterhood's Traveling Notebook Project is to bring the sisterhood of MRKH women closer together.  The experience of receiving a book that has been written in, held, dropped, driven, and loved by others with a similar life-changing diagnosis is something that words are unable  to describe.  This notebook will make all of us feel closer together, despite being worlds apart.

As of this writing, there are 170 women from 18 different countries participating in the project.  The final product will be over two years in the making, but it will be so worth the journey.

2 comments:

  1. How can I participate in this? I live in Norway.

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    1. Hi Marianne! Please email sisterhoodstravelingnotebook@gmail.com for more information :)

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