Patient Comments: Poland Syndrome - Diagnosis

Question:

When were you diagnosed with Poland syndrome? Submit Your Comment

Comment from: EvieTheEmotionalVamp, 25-34 Female (Caregiver) Published: October 06

My son (5) was diagnosed with Mobius-Poland syndrome at the age of three. It took 3 years to get him to a genetic doctor and to have a diagnosis. I am always worried. He is 33 pounds, he constantly has respiratory issues, and in all have come so far developmentally. Most of his doctors have no idea what it is, or seem nonchalant when I mention it. I feel so alone and crazy trying to do it on my own. I don't want to leave it all up to him, life is short and kids won't understand why he drools a lot.

Comment from: Tinkerbell, 55-64 Female (Patient) Published: June 26

From reading comments I feel l was quite lucky. When l was 5 they said to my mother l had polio. l never developed a breast on the left side, had reconstruction when l was about 24, then again at about 38 then l was told it was Poland syndrome l had. The 3rd time l had operation NHS would not fund it so had to pay privately as every reconstruction l have had has been on the left side. I do feel l have suffered all my life, especially at school having showers trying to hide myself; always felt conscious of it.

Comment from: kekeluca, 55-64 Female (Patient) Published: December 27

I was born on 6 December 1960 with Poland syndrome. From birth until I was 7, I spent a week in hospital every year having reconstructive surgery on my right hand. I had skin spooned from my leg to provide grafts for my hand and as a teenager I spent hours with my Dad asking if I could have my hand removed. My parents never told me what was wrong, just that it was a mistake and my mother was a nurse! We then moved 300 miles across the country when I was 14 and by the time I got to see the next consultant I was too old for any more beneficial surgery to be done. I can't play the piano, nor the violin or guitar, but then I have no musical ear! Having done more research now I understand why I have the problems I have with colds, coughs and clearing my chest. What still stuns me is how many people still stand and stare at my hand as though it is something alien. Even after 57 years, being bullied at school, I am still a freak.

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