We had a brilliant week at PIP-UK this week. We heard from 2 new families who have family members with Poland Syndrome. On top of that we’ve been invited to participate in an upcoming campaign about raising awareness on limb difference to which we absolutely said “Yes”. Its early days on this but we’ll bring you more when we can. In the mean time we wanted to share our newest Poland Syndrome story from a mum on Twitter. We told her we’d share her families story on our webpage and this is what she had to say about that….

This is Amanda’s story:

My son was born with duplex kidney hydronephrosis & duplex bladder pipes found when I had my 16 wk scan.

Kidney Hyrdronephrosis
Kidney Hyrdronephrosis is a condition where one or both of kidneys become stretched and swollen as a result of a build-up of urine inside the kidney(s).
Duplex Bladder Pipes
Duplex Bladder Pipes is where two “pipes” occur from the kidney to the bladder instead of one.

His left kidney removed at 1 years old. At 2 years old he had surgery on the bladder pipes.

I noticed the left side of his chest was sunken and we were referred to a genetics specialist. At 11 years old my was then confirmed to have a rare form of left sided Poland Syndrome.

3 yrs later my 86 yr old nan was told she had duplex kidney but hers were working fine but she had an associated condition of Poland Syndrome as she had the duplex kidney and no bodily hair apart from her head.

Neither my son or Nan had arm or hand issues with their Poland Syndrome .. are you familiar with these kidney problems?

So can you help, have you experienced something similar?

We think this story provides further evidence to the possibility that Poland Syndrome may indeed might be genetic. We found some a case study of twins with Poland Syndrome recently who appeared to show there may be a genetic link with Poland Syndrome. We’ll post more on this soon. In addition when PIP-UK attend the International Poland Syndrome Conference in Italy in November 2013, we heard from some of the medical researchers there that this may indeed be the case.

If more than one family member has Poland Syndrome in your family then do get in touch and let us know.

As ever, thanks for stopping by. Please do share our stories on Twitter, Facebook, Tumblr, email or verbally with everyone. The more we share the more learn. To quote Amanda “knowledge is good”.

 

 

 

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