I’ve just published a new story on our Parent Story page from Sharon who has a two year old with Hypermobility Disorder and Juvenile Arthritis.
In the story Sharon talks about how she KNEW something wasn’t adding up and kept “pushing and pushing” for answers.
It takes courage to keep advocating for your child when the explanations that are given just don’t feel right.
As a parent it is a very worrying and stressful place to be. You don’t want to put people off side or be dismissed as an over anxious parent – but you need answers.
I’ve met many parents with a similar story. They might attend Emergency Departments or GP clinics, maybe sometimes even see specialists and come away feeling lost and unsure how to proceed.
A correct diagnosis often depends on finding the right specialist person with the right expertise. This can be hit and miss.
The rarer the condition the more unlikely you are to find someone who can diagnose it.
Often it comes down to a resourcing issue – there is a need for more people who can accurately assess pain and point you in the right direction for specialist care.
For this reason I think we need to ask for more funding for a specialist Pain Clinic at PMH.
This clinic might help parents like Sharon work through the options until she finds an explanation for her sons pain.
It would be so much better for parents to feel less alone on this journey.
Thanks to Sharon for sharing her story – I recommend that you read Our Two Year Old Has Hypermobility and Juvenile Arthritis.