I went along to try to give blood the other day, and they asked me if I had had any hospital examinations or tests ever, so I mentioned the EEG’s, blood tests, lumbar punctures, CT and MRI Scans I have had while doctors were investigating what was wrong with me.  I explained it was because of me being a KLS sufferer, and they said they would have to investigate if I could give blood in case it triggered an episode (apparently epileptics have to be clear 3 years before they can give blood - due to the effects on the brain of giving blood). Has anyone else had this? Given blood and been ok or given blood and had an episode?  It hadn’t even crossed my mind that KLS would have had any effect on my being able to give blood but am now worried even if they say it is ok in case it does trigger it, as KLS is so rare it may not be documented properly!

Nat
xxx

Very interesting question!  I know my daughter has gotten a lot of tests and none of them triggered an episode, but she never gave a pint of blood.  She couldn’t anyway because she always had very low blood pressure.

I hope others answer who HAVE given blood - it’d be nice to hear they did and it did NOT trigger a KLS episode!

I have since had a letter saying that if I am clear for 3 years then I can then give blood….still not sure if I would though without someone who definitely knew or not if it would trigger.

Nat
xxx

My daughter has iron overload, which we discovered when trying to find the cause of her first episode of KLS. The only treatment for her genetic condition is venesection - giving a pint of blood - which is done regularly until iron levels are reduced to normal, and then maintenance venesections are done 3 or 4 times a year. I haven’t noticed that any of her episodes have followed giving blood - in fact, a couple of times she has been too unwell with what we are pretty certain is KLS (doctors don’t look for it in the UK) to have a scheduled venesection. The consultant hemotologist she sees says her hypersomnia is outside his experience, so although he has treated many, many people who have to give blood regularly, KLS is new to him.

I have given blood twice now and it hasn’t triggered an episode for me either time. I felt good after I give blood because I’m helping someone. I gave blood before I was diagnosed with KLS so I honestly didn’t know that we had to wait 3 years before giving blood. This is very interesting news to me. But like I said before I have done it twice and didn’t have an episode as a result. So good luck.