Date: 08.02.2017
From: G King
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Subject: Child with CRMO/JIA getting DLA - Advice needed
HI - I have a 12 yearold grand daughter who was diagnosed with CRMO a number of years back and as a by product now has JIA. For quite a few years there were 3 mthly periods of hospitalisation for drug transfusions etc. then about 2 years ago we got the go ahead for her to have weekly injections of a biological drug, that has transformed her movement. My daughter has to administer this injection weekly and every 3 mths she attends hospital for checkups etc. Our issue is my daughter gets DLA for her child and is now worried that she shouldn't be getting it because the injection helps so much. They have awarded it until she is 16 because there is no cure for either condition. My argument is that only for the injection we would be back to all the pain again and the deterioration of her bones, she still gets periods of pain and stiffness in her neck, back and hips and we never know when this can happen. Can anyone give any advice on whether she should be claiming or not now?
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Date: 09.02.2017
From: lucy
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Subject: Re: Child with CRMO/JIA getting DLA - Advice needed
Your grand daughter has a condition that could change any day and no doubt they will decide at some point to review it so I think she is entitled to it and would wait to see what happens when she has her next review. It is an interesting question but as you say she still has pain and stiffness and no doubt suffered for a while before she got it. I would be interested to see what others think.
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