Poland Syndrome Support

Just diagnosed with Poland Syndrome

A bit about me.. I am a 47 year old woman, who found out only yesterday that I have Poland Syndrome… I cannot believe that I never knew until yesterday that in fact, I am not alone in my experience.

I finally decided just last month that I would go see a plastic surgeon about corrective breast surgery. I had never openly discussed the breast issue with anyone, not even my mother, who died when I was 20.

My right side is affected as well as my spine. The main focus has always been on my hand and arm. I have always been aware that my bone structure was not symmetrical but it’s not overly noticeable and I dress accordingly. I have had many surgeries over the years to facilitate “normal” function of my hand. I have lots of scars from skin grafts.

To my knowledge, the drs did not realize that, in fact, my breast was involved as it probably was not apparent until I started to develop in my early adolescence and then of course, I was ashamed and embarrassed and just felt like a freak about it.

I am sure that the family drs I had as a child and as an adult knew nothing about Poland Syndrome. When I mentioned the considerable difference in my breasts, the last dr, just brushed it off with a nervous statement saying “Most women have one breast bigger or smaller than the other”. Any chance of having an open dialogue about the condition was quickly dismissed and it was never broached again until a few months ago when I started seeing a new doctor who I felt very comfortable with. I sent an email telling him my story because I knew I would never be able to say the words without having an emotional meltdown. I explained why I wanted him to refer me to a plastic surgeon for corrective surgery. He was compassionate and supportive and I got a referral very quickly.

Yesterday the surgeon, who was very kind, looked at my breasts and said.. “wow, that is interesting… I have never seen this with Poland Syndrome”.. I said what?? Poland Syndrome?? “like the country??”, I asked.. He laughed and told me it was a dr’s name.. Anyway,he explained “classic Poland Syndrome” but went on to explain how individual it is…

I was born with my whole right hand webbed and the whole hand, including the lenght of my fingers, was the size of my left palm. I am missing some of my knuckles, my arm is a couple inches shorter and smaller and my rib cage is a bit “off”… I have to tell you that my hand has never kept me from becoming or doing what I want. I was a cheerleader, a gymnast, I rode horses, and motorbikes as a girl. I was miss congeniality in a provincial pageant as a young adult. I became a massage therapist, I am a medical transcriptionist in my career. Just to give you some idea of how this condition is just that…a condition.. it’s not a limitation in my mind, so it’s not been in my life. If anything it has made me set the bar higher for myself. I tend to be an over-achiever..

In my case, I have a perfectly shaped breast but am totally missing the pec, so I have no fullness on the top of my breast and around under my arm. I successfully breast-fed both my kids from both breasts and for me the issue is the size difference.. I never knew there was a “syndrome group” that I was a member of…

I explained to the surgeon what I need, want and expect.. I have done the “inner” balancing, I know I am not my breasts…
We laughed..Having said that, I feel a sense of liberation.

On a very deep level, in a dark corner of my heart, I held a secret, even from myself, that I felt defective and broken. I was turning myself inside out to prove that I was as worthy as anyone else to be looked upon as “normal”, hehe, whatever “that” is.. It’s really kind of a joke, when you think about it.. Normal? say what?!!

Anyway, when I got home I immediately went to the computer… I checked out some “You Tube” stories and some medical journals etc about this condition… I cried… happy tears… I just feel less alone in my experience.. the Light came into that dark place where I was hiding the secret.

Many times I have come to “The Wall” and not been able to push through the feelings.

This time, the time was ripe… I pushed through the feelings and pushed on.. The “mountain moved” out of my way. I stept out of my past. :>

I see myself different today than yesterday.. The physical has not changed, but everything has changed.

I truly stood in my truth and “bared” my Soul, I could feel the shift of energy in me and around me.

I believe that anything that heals the wounded Soul, like a tuning fork it sets a chain reaction in play.. A secret memo goes out into the world and it touches All in that common Wound, whether we know it or not. I believe we are all connected… We all rise or all fall…

I think that The Wound that binds us is not Poland Syndrome… the wound is the hole in the Soul , the accumulation of stored emotions related to

isolation, rejection judgment and self inflicted shame. That is the human condtion… All of these blocked emotions can be released like a breath of

fresh air if the “conditions” are right.. That’s what I felt yesterday.. When one heals, we all heal, a little at a time.. So Mote it be!!

Anyway, enough of my yammering on… I just type what comes to me…Those are my thoughts…. I am truly blessed to have found Y’all. .

PS… is a post-script… it’s not the story.

Thanks and feel free to share.

Related Posts:

One Response to “Just diagnosed with Poland Syndrome”

  1. Liz says:

    I love this story. How brave and thought provoking it is. It amazes me how many people aren’t diagnosed until later in life. Having P.S. certainly has not held this lady back in life. She tells us her real thoughts and fears and is so open and honest. To tell us she could still breast feed her children, is an important piece of information that may answer someone else’s question. Thank you for sharing your story.

Leave a Reply

Your email address will not be published. Required fields are marked *

Copyright PIP-UK Poland Syndrome Charity 2015 | Designed by Tkey. | Based on Puretype by Elegant Themes