Poland Syndrome Support

Poland Syndrome | Letter to the Telegraph

Poland Syndrome and its level of “disability” as a label is something we have struggled with at PIP-UK to get right. On the one hand there is a certain amount of negativity associated with the word and some people feel Poland Syndrome is not sufficiently debilitating to fall into this category. On the other hand receiving some extra funds to enable a child to do things to enhance their confidence or to enable therapy seems plausible.

A letter was written to the Telegraph recently which prompted the debate once more. Take a read

Who benefits
SIR – I was outraged to read that specially adapted homes and payments of Disability Living Allowance (DLA) are given to people who have become obese due to their chosen lifestyle (“Mother and child happy to be fat on benefits”).
My daughter was born with Poland’s syndrome, a rare birth defect characterised by underdevelopment of the chest muscle and hand on one side of the body. She has suffered – and will continue to suffer – a life of corrective surgery. Owing to her condition, she is limited in the type of work she can do and is therefore in receipt of a low income.
The various surgical procedures on her right hand and right chest have left her with chronic pain. Her condition has resulted in a spinal defect which also causes her great pain.
She was told last year that, as she was not sufficiently disabled, her DLA payments would be reduced. This year she was told to re-apply, as DLA is being replaced by another form of benefit payment.
She has also been on the council house waiting list for several years: the cost of her privately rented accommodation, taxes and heating take up the majority of her salary, leaving little for food and clothing.
How can it be right that others, through greed and sloth, get benefit payments far exceeding my daughter’s salary, when she is denied the financial help she so sorely needs?
Karen Dewdney

So what are you thoughts as a parent raising a child with Poland Syndrome or an individual who has Poland Syndrome. What do you think?

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13 Responses to “Poland Syndrome | Letter to the Telegraph”

  1. This is truly an outrage! I too had to fight for my son’s benefits as he too has a very severe form of Polands and has also just recently been diagnosed with more horrible conditions. I remeber the letter of denial they sent me in the beginning, it stated, “based on comparison to other children Brody age we could not deem him as disabled”. I’d like to know with whom they compared my son to.

    • PIP Admin says:

      Thank you for sharing 🙂

      • Patricia says:

        My son has Poland’s Syndrome, I had taken him to the Drs at a few months old and was told there was nothing to be concerned about. Following his enrolment on a sports course at college and advice from his tutors, he went back to the GP and was eventually diagnosed with the syndrome at 21 yrs of age a devastating blow to both his life and his confidence, he suffers from bouts of depression due to this yet was offered no support or guidance and still has received nothing with regards to information on the disorder other than what he has researched for his self.He has been advised against doing any thing to strenuous or physical, he has been offered very little treatment wise and can claim no benefits even though there is a very real possibility of this disorder ending with him in a wheelchair at a very early age. Its disgusting that there is no support for this ailment.

  2. Julie Lyons says:

    Hi, I had the same problems with the Centrelink won’t provide us with “Child with Disability Allowance) (Australian version of DLA) for my daughter Alyssa. Because they think that she doesn’t have enough disability. But we do need their support with this payment to help us with travelling to school every day and treatment e.g. hydro therapy to develop her motor development skills. I am still fighting with Centrelink about this allowance. I think I have given up. We need do something about this for everyone who born with P.S. that they should get the same benefits allowances as other children with disabilities. Thanks Cheers Julie (Australian mother of child with P.S.)

  3. Kelly molloy says:

    My son has been denied dla an has Poland syndrome has right arm an hand an leg shorter an also has muscle missing in right side of chest an upper arm he also has catch 2 I’m his muscle is his legs which he can’t weight bare at all has sleep system calipers an gathers for night sleeping an splints for day time an they aren’t helping him to stand so now awaiting a standing frame my son also has sleep apnea yet my son has been told no he is 16 months old an can’t even hold his own bottle but they have told me he is same as a child hos own age am sorry but most kids hold there own bottle by at least 6 months old an learn to sit roughly by 9 months an walk by 1 an half my son has only just started sitting alone an that’s all he can do it a discusting the way kids get it for silly things when there is kids out there that really need it.

  4. Paola Marchese says:

    It is disgusting. I have Poland Syndrome but luckily not severe enough to affect my working life. I actually have a good salary. But I know I’m lucky and what my destiny could have been. I had to fight so hard for what I got and I have suffered so much for this disease (more psychologically) that people affected by Poland Syndrome would have more support even financially. Possibly by cutting the benefits that these morons who chose to be obese and are stupidly proud of it have.

  5. bridget says:

    I also find it appalling that someone who chooses to eat too much and is too lazy to get off their backside can have a life on benefits. It is not their fault that the benefits system helps them. I was born with PS in 1949 and did not even know it had a name until I was aged 55. My parents ignored the condition and I got on with life. I was a very good tennis player until my shoulder gave out, so far the sadist day of my life. I was born without a right breast and major pectoral muscle. I got married in 1970 and 45 years later we are still together. I chose not to have children as I did not want them born the same. I worked for 40 years and after being made redundant just got JSA for 6 months and never though to claim DLA.
    I have suffered with sciatica and shoulder and neck problems for over 30 years and when I was made redundant felt it was due to health. I sued for unfair dismissal but lost. However I have been enjoying retirement and have been a volunteer for many charities. Luckily I did not have a hand deformity so cannot imagine all the additional problems that can cause. Make the best of what you have and do the best you can

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