Rare Disease Day: Poland Syndrome

I have a photo of me aged about 16. A black and white portrait; head and my naked chest. There is no smile, no pout, instead a penetrating stare directly back at the viewer. Look closely and the photo reveals my lop sided breast, a result of Poland Syndrome.

Puberty hit me at 10/ 11, quickly revealing differences in the way I was growing to the other girls. For me my Poland’s meant only one breast, the easier end of this rare congenital disease. For others the condition is evident from birth, with missing or undeveloped chest muscles, or/and the shoulder, arm and hand might be involved.

Like many other people with Poland Syndrome I had no idea of what it was, or why I had it. In puberty I even wondered if it was my own fault- my nipples had itched as they developed, I worried did I itch them to much? (The nipple on the flat side looked broken up)

Comfort, the Breast Quilt. Work in progress, various artists

My mum knew about my lopsided breasts, and was supportive, it was just the way I was. Primary School was a different thing, I was teased, songs were made up about me, I was made to feel other, different, a freak.

My mum managed to find me a cone shaped foam insert for my bra, I went to a secondary school where nobody knew me, and somehow I managed to disguise myself and my breast. The teasing was for different things now!

Aged 15, I was in a relationship with my first proper boyfriend. Like every boyfriend since I don’t remember him flinching or reacting oddly when he saw me naked. Boyfriends/partners have shown curiosity, but have never been rude. Sadly I know of some women with the condition today who are worrying about how their partners are going to react when they see them naked.

Work in progress. Comfort, the Breast Quilt. Lois Blackburn 2023

It’s difficult to pin down how the condition has affected me as I’ve grown up. As a late teen and in my early 20s, I consciously revealed my whole body on a nudist beach in Cornwall, a bit of a F*** you rebellion. But it was a complex relationship with my body, like so many people I’ve never had a good confident sense of body image.

In my late teens, a doctor explained that I could have a breast augmentation operation for the affected breast to even them out. It wasn’t until my mid 20s until I decided to find out more. 30 years later, just before Christmas I had my 5th breast operation. Somehow I didn’t take on board when I had my first operation that the implants wouldn’t last for ever- I guess when your in your 20s, ten to fifteen years seems a long time away. My first 3 implants were silicon and saline based, when they end their lifespan the first thing I knew about it was a ruptured implant, shown up on a breast scan. The silicon escapes from the chest, and moves around the body, and can be quite uncomfortable, some people are worried and campaigning about the potential health issues of silicon implants and are having them removed.

Recovery after 4th operation, removal of capsular implant, replacement implant, and breast lift on other side.

Two of my implant operations have resulted in capsular contracture, when a tissues capsule forms that is hard and dense, it’s painful and distorts the shape. Just before Christmas I had my first fat transfer breast augmentation, I will have a follow up operation later this year. It’s the first natural looking and feeling breast I’ve had on that side.

I’ve managed to breast feed both my children on the unaffected breast, in fact one of the surgeons explained that I was born with twice the normal milk ducts in that breast, strangely and wonderfully preparing my body for breast feeding.

‘Milk ducts’ work in progress for Comfort the Breast Quilt. Lois Blackburn

In all of the years of operations I only remember once a surgeon mentioning that I might have slight Poland Syndrome, and that was a passing comment. Thanks to the Poland Syndrome charity PIP, awareness and support for people with this rare condition is slowly improving. Through the organisation I can now say with confidence that I have Poland Syndrome, and even meet for the first time other people with the condition.

My own story inspired my current art project, ‘Comfort’, that investigates our relationships with our breasts. In every workshop I do, I share my story of Poland Syndrome, each time I do, I feel less embarrassed sharing something I’ve hidden for so many years. Around 100 women and teens will create embroideries for the Comfort quilt, and the quilt will be exhibited in a tour later this year. Each participant and audience member will go away also knowing about the condition. In turn, they can spread the word of the condition, share a bit of comfort to a friend or family member who couldn’t put a name to why their breast hadn’t developed… and feel a little less alone.

Work in progress, ‘Comfort, the Breast quilt.’ Various artists.

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