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chondromalacia Patella snd child

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chondromalacia Patella snd child

7 replies 266 views
Good evening 

our daughter has been having terrible knee joint pain and it randomly giving way etc

long story short 2 years of physio a mri and many appointmemrs  at hospital they told her today it’s chondromalacia patella , it’s not going to get better and there is no more treatment to offer.

shes 15 and uses one crutch at school

looking to the future, college  etc she is now in a real downer as she now knows she’s got it for life snd could get worse.



how does this effect her life for now and future???? 

I don’t wish my daughter to have a life on benefits atal as I know it can be a life trap but I’d like to know what options she has if any just incase in a year or so she’s a lot worse and unable to do things easily 


already now she will need to choose a career that effects her condition less but at 15 at least she can plan her life around this (college wise)

what are people’s thoughts? 



Thsnkyou 


Replies

  • edited 13 February at 7:17PM
    apples24apples24
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    edited 13 February at 7:17PM
    She had a mri then key hole surgery to her knee

    she also has fissures aparantly 
  • poppy12345poppy12345
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    This should have been posted in the discussions part of the form because it's not really related to a benefits question.

    Personally, what you need to ask yourself and more importantly your daughter is, did this condition affect her life before she was diagnosed? Did it stop her doing what she wanted to do? Many people think that once they've had a diagnosis that they are so much worse than they were before the diagnosis but really they aren't any worse. It's just the diagnosis makes them feel that way, especially if you weren't expecting that.

    Having a diagnosis, certainly doesn't mean a life on benefits.


  • sazaccountsazaccount
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    Please don't go down the route of a family member who basically stopped her daughter from doing anything after ankle nerve damage at 10, she is now in her 30's and is having to redo A Levels to be able to get into university to get off benefits. 
    I've had issues with my legs since I was young started off with leg bones growing quicker than my knee caps and has progressed into a lebrum tear in my hip joint and bursitis/chronic tendonitis in the same hip basically in chronic pain... Don't let it stop her! I have traveled around the work 4 times, worked in 5 different countries. Tried a range of jobs, some I was able to achieve at and other well...

    My advise to her is work with pain management and physio to get the surrounding area as strong as it can possibly be and to know her limits and how to deal with the pain. During college and university there is the disabled students allowance which she will be able to apply for who will give support, transport costs etc, and access to work for things like taxis when in work.

    If her mobility is getting bad then looking at something like PIP for extra support. 

    There will be jobs she can do seated, office jobs even working some check out work in the supermarkets is seated somethings like excessive field work may not be suitable. It maybe an idea for your daughter to see a therapist just to work though and out some of the emotions she maybe feeling and the "grief" of a lost life. 
    Thanks to money saving tips and debt repayments/becoming debt free I have been able to work and travel for the last 4 years visiting 12 countries and working within 3 of them. Currently living and working in Canada :beer: :dance:
  • Spoonie_TurtleSpoonie_Turtle
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    If it mainly 'only' affects her mobility, of course that needs to be accommodated but if she's otherwise perfectly healthy, college and work are absolutely achievable and hopefully without too much restriction on the type of work she could do.

    Benefits are not a bad thing - if she needs extra support and is entitled to something like PIP, then she absolutely should have no shame in claiming. But work-wise, beyond being aware of any accommodations needed, don't worry. Jobs traditionally requiring one to be on one's feet might be adapted, or she could use something like a scooter (or other appropriate aid) to allow her to cover longer distances if she did want to do something like a job involving field work. She may not be able to be a climbing instructor or a ballerina, but beyond that she still has a wide range of opportunities open to her. There are even adapted versions of most sports!

    Of course, chronic pain may well be a factor but don't just assume there's really anything she can't do; always look into whether it can be sufficiently adapted and go from there :)

    As poppy says, the physical effects are still the same as before the diagnosis, but the psychological effects are a bit different and now it's the part where your daughter (and you) have to come to terms with it and learn how best to live with it. She may find a supportive community online, of those with the same and similar conditions. The youngsters especially are very resourceful, and the tips shared can be life-changing. I wish your daughter and your family all the best in navigating your 'new normal' :) 
  • kingfisherbluekingfisherblue
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    One of my sons has a knee condition, albeit a different one. He also has Asperger's. Despite the pain in his knee, it doesn't hold him back. He worked hard and gained good grades, and has worked since leaving college. Initially he didn't get the exact type of job that he wanted, so he took other jobs. Now, he's working in a good job with prospects. It has some physical aspects, but within his limits. He doesn't claim benefits, as he sees them for those who need them, like my other son who has been severely disabled since birth.
    It may be necessary for your daughter to claim benefits at some point, but it certainly doesn't mean that she can't have a job or career. She may face some blips along the way, and she might not be able to do some things, but she can still achieve. I wish her a successful future.
  • apples24apples24
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    Thsnkyoy 


    yes of course we are supporting her all the way.

    she struggled on stairs and had to use a crutch on one side at school.

    ive lost count of the amount of times her knee has given way and she just fell down.
    Some days are easier than others for her

  • born_againborn_again
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    A up side (if there is one) is many larger companies actively encourage less able bodied people to work for them. I know who I work for do. We all get the chance to have special adaptions to help with the role. So anything from special desks/chairs to anything to help with computer work easier.

    Sounds like you are fully supportive of her and her needs, as hard as it is for a parent.
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