Why a diagnosis is important to us

Published March 31, 2012 by swanfreddie

The day Freddie was born we knew he had syndrome of some type. We just didn’t know what kind. I never for one minute imagined we wouldn’t know what was wrong with him.
I can understand why alot of people would think that having a diagnosis isn’t really important. I’ve seen alot of people questioning the need for a diagnosis. For some people it’s not important but for us there are many reasons as to why it is.

  • Without a diagnosis it’s alot harder to find support & somewhere to fit in. How can you find other people to understand what you are going through if you don’t know what it is? We were lucky to find swan(syndromes without a name) which is a support group for undiagnosed children. The children are all unique in their own way but we are all in the same boat.
  • Filing out forms becomes a nightmare, and with a disabled child there are alot of forms to fill out! Theres always a box that asks for a diagnosis. Simply putting undiagnosed isn’t enough. There needs to be an explanation to go with that.
  • Trying to explain to other people whats wrong with your child becomes hard & sometimes awkward. Alot of people assume that if your child isn’t diagnosed they will outgrow their problems.
  • Not having a diagnosis lead me to start thinking there was nothing wrong with Freddie & i was just a bad mum & it was all my fault.
  • Without a diagnosis we have no real idea what the future holds. I understand even with a diagnosis i won’t ever get an exact idea but to roughly know what to expect would help. It would stop the future being so scary & help us have some sort of sense of direction.
  • If we ever wanted to have anymore children without a diagnosis we don’t know whether any more children will be affected.
  • If my daughter went on to have children we don’t know if her children could be affected.
  • When going to hospital appointments to meet new doctors you spent the whole appointment discussing Freddies problems as we can’t simply just name a syndrome.
  • Alot of undiagnosed children have to fight more to get the help & support they need. Without a diagnosis they tend to get pushed aside more.
  • Without a diagnosis alot of people assume that it won’t be serious, when in fact it can be fatal.
  • Having a diagnosis would help me know if my childs condition is going to progress or deteriote.
  • Getting travel insurance for an undiagnosed child is made alot harder.
  • Some people assume a child is undiagnosed because the parents haven’t pushed for a diagnosis. That we’re somehow not making the effort.

I’m sure the list could go on! For us we will always want a diagnosis of Freddies syndrome. The doctors think it will be unlikely so we may have to just come to terms with the fact that Freddie will remain a medical mystery. His own little syndrome unique to him.

 

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6 comments on “Why a diagnosis is important to us

  • Well said. Totally agree with you on every point. Another thing I would add is that some people assume a child is undiagnosed because the parents haven’t pushed for a diagnosis. That we’re somehow not making the effort. There’s not a lot of recognition out there that so many children just never get a diagnosis.

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