My Family, And The Rare Medical Condition

So what happens…….

Well my guys have a defective sodium channels which let potassium into places where it should not be, causing an episode.  This can affect anything from one side of the body or the other with paralysis or even total paralysis for the whole body.  This means their mobility is greatly compromised and they would need help with dressing, tackling stairs, the most normal basic day to day things we take for granted, to name but a few.

We had the children D.N.A tested when they showed signs of the condition, which means they were born with it.  It is inherited.  The test just confirmed our suspicions.

We do a lot of what could be called preventative work to try and limit episodes, but what could be preventative today might well be a trigger tomorrow or a couple of days down the line.  We have the children on regular medication – which is not a miracle cure, as it can work one day and not the next.  It is used to help the children excrete excess potassium.  Their diets are closely monitored so that their food is not too high in potassium, and general planning of a our day to day lives, not getting too much or too little exercise, (this is only a brief insight).  All of the preventative work we do could be in vain as there are other things that act as triggers which we have no control over, like atmospheric conditions, common colds, vomiting and diarrhoea, headaches (to name but a few things).

This is a rare condition that not a lot of people know about or understand, but one thing is for sure my children are not going to grow out of it – they will have to live with it for the rest of their lives – it is part of their D.N.A.

I would like to give you an insight into our experiences with this rare condition, if you would be interested in reading about them.




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