Is it okay for people with ataxia to donate blood?

[jurgen]

I´ll find out and tell you.

Personally. I wouldn´t donate blood.

Yours

Jurgen

PS is it o.k. by you if the admins tags your

question ?

[Hidden in reply to jurgen]

Sure Jurgen. I keep forgetting. Thanks

[Litty]

Oh yes, but they cannot cope with all the forms, so it might bean idea to have a letter explaining what you have. They ended up taking some blood, and double checking every time. I used to give blood until I had a hysterectomy. I was so anaemic at the time, and I needed 2 pints of blood, during the operation. It was in the days before they have proper screening and they were scared I had caught diseases from it (luckily I had not).

I suppose the rules might have changed - it was a long time ago!

I think we probably need Harriet on this one.

[Wyndham]

Very good question

[HarryB Administrator]

Hi Iain

That is a good question.

It is absolutely OK for a person with ataxia to donate blood from a blood point of view. The diseases that the transfusion service are concerned about are those that are transmitted by blood or other bodily fluids, for example HIV or hepatitis, that may potentially put the person receiving the blood at risk of harm. Ataxia does not fall into this category at all.

However the the donor must answer questions about medical history and take a short physical examination to make sure the donation is not hazardous to his or her health. I think the main complication of donating blood that is relevant to patients with ataxia is a sudden lowering of blood pressure rendering one dizzy and faint, unsteady on feet with an increased risk of falling. Obviously being in this situation would be hazardous to the health of someone with ataxia and would make donating blood unwise.

I hope this helps.

Harriet

[Hidden]

Thanks everyone. Next time the blood transfusion service comes to my town I will donate. I have donated blood in the past but this was many years ago.

[jurgen in reply to Hidden]

Are you sure Ian ?????

Although the expert said:

**********************

Obviously being in this situation would be hazardous to the health

of someone with ataxia and would make donating blood unwise.

*******************

Or do you mean " I will not donate" ?

Regards

[Hidden in reply to jurgen]

I said Jurgen that I would indeed donate blood, but I will only do so if the initial pre-donor examination is okay. I believe that there is a small blood sample taken from a small prick on the thumb which is checked to make sure your blood is fine?

[Hidden in reply to Hidden]

I can also say that I have had no history of having low blood pressure.

[Litty in reply to Hidden]

Good luck Iain giving it a go. Take your time getting up after, and really enjoy the tea and biscuits, to let all get back to normal : )

[Hidden]

Hi all I am in the same situation I used to donate regularly but stopped when my ataxia arrived out of fear of passing it on, all the points made are valid but I would like to add one more. If your ataxia is of "cause unknown" my logic says that they don't know a it about it so how can they say it won't be passed on. when I inquired about it I was told that I could donate as a for research only thing but I was always worried it may get mixed up so in my view better safe than sorry

[jurgen in reply to Hidden]

If your ataxia is of "cause unknown" my logic says......

***********************************

I quite agree with " johnpapapa"

Regards

[silkwood]

I have o neg blood and gave blood for years but they rejected me when I was diagnosed as they wwere concerned about my safety not what I would pass on.I haven't given blood for about five years now for this reason.I tried to get both of my children to give blood but they would not even though there are requests for our blood group.It is rare because we are a universal donor but last time I went and told them abkout my ataxia it was discovered from the preliminary test that I was low in iron so I was rejected anyway.Also I have got low blood pressure which I have always had but in the case of ataxia it was mistaken for MSA instead of Cerebellar Ataxia. I think they are just being cautious and it is nice of them to be concerned about our welfare. It is hard when all you want to do is help others.

[gossy]

when i have to have a blood sample taken i always feel faint and dizzy even before i was diagnosed with ataxia so i would be know good as a donor but good luck (linda aka as gossy)

[Hidden]

anyone wondering about the risk of transmitting ataxia by blood donations should read this

uk.lifestyle.yahoo.com/dani... I do not know if this will come through as a link but if not I am sure you will find a way round it

[HarryB Administrator in reply to Hidden]

Thank you for the link Johnpa.

I would like to reassure you and everyone else that genetic material is passed on through sperm but NOT through blood. As such it is NOT possible to transmit or pass Ataxia on through a blood transfusion or blood donation.

Harriet

[Hidden]

just one question for people like me whose ataxia gene can not be found how will the tests carried out on blood find it,perhaps the blood transfusion service should do ataxia uk research

[Hidden]

The confusion between donating blood to save lives and inheriting a genetic disorder that may be passed on to another person are (I think) completely different seperate issues?. I completely agree with Harriet that any transmission of of blood from a blood doner,

'Will not result in the doner her/himself inheriting any kind of ataxia' as a result of the transfussion.

If a son/daughter or grandson/daughter of mine inherits ataxia, I believe that its not because of passing on blood to them. Instead, I believe that its the sperm I passed on through intercourse.

Am I missing the point here? My initial question has raised concerns over my thinking?

[Hidden in reply to Hidden]

I meant the 'pateint who receives the blood donation will not inherit any kind of ataxia as a result from the transfussion', and not as I stated the, 'donor her/himself'. Sorry.

[HarryB Administrator in reply to Hidden]

Hi Iain

I don't think you are missing the point at all.

Harriet

[Hidden]

just to clarify my point of view in some cases I believe that there is not enough known about transmission/detection the link I gave about the sperm transmission was to make the point that things can and do go wrong, sorry if people got sidetracked but in my opinion the only way to be sure is to keep it in your arm and before you judge me I would like to point out that I used to be a blood doner and now I know what i may have passed on it scares me

[Hidden]

Thanks for your reply Johnpa. I don't think anyone is judging you (certainly not me anyway). I just hope that people are now aware that 'blood donation' and 'sperm donation' are completely different issues.

Because of my ataxia I would not under any circumstances donate sperm. I still intend to donate blood though. This is through my own personal choice as I feel I am otherwise a very healthy person. Thanks again. Iain

[Hidden]

it is your choice although I obviously would not and I would strongly recommend against it no mater what others say I don't think enough is known at present. To risk going off at a tangent myxomatosis in rabbits was thought to be safe at the time. Donations for "research only" can get mixed up with others the sperm donation saga proves mistakes do happen and considering the small amount of sperm involved and the large amount of blood the odds are when not if it will happen but when.

[HarryB Administrator in reply to Hidden]

Hi John

Oh goodness, please do not think anyone is judging you at all. It is fabulous that you have been a blood donor in the past. I wish I had been able to. I have been refused on giving blood before, not because there was any concern that I would pass ataxia on but because of the risk of my blood pressure dropping making me more likely than normal to fall over.

The question that you asked above is a good one. Our DNA is stored in many different cells in our body including some of the cells found in blood. The DNA is exactly the same irrespective of which cell it is found in. Hence when we give a blood test for DNA testing, those blood cells, namely the white blood cells responsible for fighting infection, are isolated and the DNA tested.

However, as has already been said, DNA\genetic material cannot be passed on through blood form person to person, only from parent to child.

Harriet

[Hidden]

Harriet as i have said I am not convinced so in my opinion the only certain way to be sure is not to donate, but encourage others to. I am of the view that next week or sometime in the future things will change and then it will be to late to look back and say if only. But by not donating it will not be possible to look back in regret

[Hidden]

What a topic! I would like to point out that I am not being biased in any way. But on the basis of professional knowledge and scientific fact, I see Harriets explanations more valid. Thank you so much Johnpa and others for your contribution to the discussion. I wish you all well. Thanks.

[Hidden]

ian25 you forgot to add the word "current" to Harriets points none of us know what tomorrow will bring but we can only hope it's good news

[HarryB Administrator]

Hi Iain

I returned from the conference in Stansted yesterday where we were discussing donating organs after death. Your question was relevant to this discussion also.

My answer above to your question still stands. If you have a genetic cause for your ataxia then no harm at all will be caused to the person receiving your blood. However idiopathic or unknown causes are a little more complicated. There are some causes of ataxia, for example immune-mediated, when it might not be possible that you could donate blood. The advice would be to speak to your own neurologist as to their opinion. It might be that they are sure the cause of your ataxia is genetic or that they have ruled out any causes that would make it unwise for you to donate blood.

I think I read somewhere that you are not seeing a neurologist at the moment. You should be under a local neurologist at the very least (your GP should refer you) but I think I have said to you before I would absolutely recommend going to the Ataxia Centre in Newcastle even if it is a one-off for advice on diagnosis. They would communicate with your GP/neurologist.

Missed you in Stansted! The conference is in Manchester next year on Sat Oct 5th 2013. Maybe you will be able to make that one.

Harriet

[Hidden in reply to HarryB]

Thanks for your reply Harriet. I think as you say, I should speak to my Neurologist first. I mentioned in the last poll question that I have not seen anyone apart from my GP for over a year.

Like many others I have had numerous tests (including blood tests) from both my Neurologist and initially beforehand a Haematologist. It was the Haematologist who gave me the diagnosis of having 'Severe Neuropathy' and who made the referral for me to see a Neurologist. All the blood tests from both Haematolgy and Neurology have been negative and this is why I thought it would still be safe to donate blood. I will give it thought now to go and see an ataxia specialist at the Ataxia Centre in Newcastle. I'll speak to my GP about this. Thanks.

Hopefully Elaine and I can make it to the conference in Manchester next year.

Iain

[Hidden in reply to Hidden]

Sorry its taken so long to reply but we were away for the week to Flamingoland.

[HarryB Administrator in reply to Hidden]

I hope you both had a great time!

[Sqd-2415_hoc]

I have been a regular donor and was hoping to reach one for every year of my age (67)but my local transfusion service said that it would be better from my perspective not to give - but I could still pop in for tea and bickies!

Rodders

Andover

[Hidden in reply to Sqd-2415_hoc]

I'm not going to bother now sqd. Too awkward for me to attend any blood banks now anayway.