Gitelman's syndrome 1 in 40,000

I can see where you are coming from Alie - if you are aware of the importance of medication then you are forearmed - thank you for bringing all that to everyone's attention.

Is there an association for this condition? Could you contact them and ask them to highlight the dangers.

I am sure you know that we are all thinking of you.

What I would like is to see the things that put people at risk more widely known.
So I put up the list above.
If we had known we could have got her to be sensible!

Thanks though....Alie

I'm so sorry for your loss Alie, I haven't heard about Gitelman's Syndrome, but my husband's eldest son from his 1st marriage died from a more common condition, Cardiomyopathy this was a sudden death completely out of the blue. Having a heightened awareness of this condition since, I have read about quite a few young people who have collapsed suddenly and died, often playing sport, Fabrice Muamba, the young footballer was one, although thankfully he survived due to the intervention of a doctor in the crowd. I only know second hand the pain of losing a child and I know it's a long process coming to terms with that, everyone deals with it in a different way I guess and eventually the pain subsides although the loss will always be there.

That is so sad, I am really sorry for your loss Allie.

I have just discovered that she was far more at risk of sudden death (SADS) than we ever knew. Whether she knew, I very much doubt.
We certainly didn't.

"Sudden Arrhythmic Death Syndrome.
The level of risk of sudden death helps decide on the need for treatment. Those who are statistically at greatest risk of sudden death are people with one or more of the following features:
•a previous cardiac arrest
•blackouts
•a very long QT interval on the ECG
•sodium channel mutations
•young adult women."

Her score - most of these. I don't know about the ECG bit but it is likely in Gitelmans.

I hadn't realised your DD had a tiny baby too.
My heart goes out to you and your family, x

So sorry for your loss Alie

Oh that's so very sad. How painful for you all. My heart goes out to you. Can't write more. X

So so sorry about your daughter, with a six month old baby, fatigue is a constant, so your DD wouldnt have connected this as a symptom of this dreadful condition, I haven't heard of it either.

All the messages have helped me begin to deal with this - thank you everyone.
Yes the baby at least should be checked, this we will get to.

It is only since she died and I have been speaking with her partner and friends, that I hear that she probably wasn't taking her pills...she did not as far as I know get very much in the way of symptoms except fatigue, and tried not to think about her condition too much.
(She had collapsed once before years ago, though.)

The various sites about it (and there are far more than there were in 2001 when she was diagnosed) mostly only warn vaguely of heart problems and few mention specifically a risk of sudden death and this is, I think, mainly the ones intended not for patients but for doctors.
GPs usually had to look it up.

It wasn't until after her death that I googled 'Gitelmans' together with 'sudden death' and this was clear.

It's possible that the connection is only recently being discovered, as there are so few patients with the condition.....

Alie I'm so sorry for your loss{flowers].

I've never come across it. As you say, it's extremely rare.
I know that doesn't help, but I hope that waves of love and sympathy from GRANSNET will a little.

Potassium and magnesium are important for the heart and an unbalance can cause arrhythmia which can result in sudden death. I am terribly sorry you had to lose your daughter in this traumatic way. Have the rest of the family been checked out in case it is genetic ?

So sorry to hear your news. Very very sad!

Sorry Alie I have never heard of this before. So sad for all of you

It is very sad if your daughter was unaware of the importance of taking her meds. I presume her GP prescribed the pills? Was nothing said about the risks if the pills were not taken properly? Thinking of you and your daughter's family, alie. Such a sad time

I have to confess I've never heard of this Alie. It's shocking that neither of you were warned about this risk.
My thoughts and prayers are with you x