Hi just come home from the genetic counsellor We ve previously been told our...

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  • I can't think of any cons. As someone who was only diagnosed age 30 I do think it helps alot when I have any injury the person who treats me will understand what I can and cannot do as far as rehab etc goes. It also helps when dealing with people who might see you as being lazy. For children especially in secondary school it may help to get reasonable adjustments such as extra break time or time getting from class to class depending on his needs. He may never need to use the diagnosis but it will be there if he does need it and most importantly for his own peace of mind. Having a diagnosis really helped me not feel so depressed about the constant pain and fatigue as I knew there was a genuine reason behind it.

  • Thank you Justine. That's makes sense. X Just don't him to feel any more different than he already does

  • I know the feeling I have 3 with special needs the eldest being 13 is very aware he is different but he makes it a positive in that he accepts it's part of who he is and he gets on with things just like his peers. You don't need to broadcast it but at least it's there when and if he does need it. It's very positive that he will get a diagnosis now rather than struggle as an adult as it is harder to access services at that point.

  • I'm fighting to get a genetics appointment, I think a formal genetics diagnosis will help shut up those who doubt my son's condition.

  • It's been a long journey for us. As you all know and probably similar to other stories his symptoms started as soon as he started walking. We didn't know what is was. He was diagnosed by the paediatrician consultant when he was four. We've been attending 6 monthly visits since x family members are the most difficult to understand because he looks normal. It's been people near to us who have needed educating. Good luck Deb. I know it's not easy. X

  • I am 37 and still won't diagnosis me my physio has included it in the letter to my gp. Both my children. Are diagnosed and that takes a huge strain of the challenges of school I am lucky my two still manage all the sports and dance groups but they do get fatigued and pain. My pain has acellerated as I have gotten older x

  • GPs worry about about insurance and job prospects in the future but if he needs help now you need the diagnosis to access it x