TOPIC:

My 17 yr daughter has what I call "recurrent acute" ITP, ie her platelets plummet when she's sick but she bounces back without treatment most of the time. She's received IViG twice, once just over a year ago, once 5 years ago. Her platelets have been stable the last two months, since flu shot episode.

Today she was turned down for donating blood because she has had over one ITP episode and is considered chronic.

I had read mixed things about blood donations on the old discussion boards, but this is one more episode in the "no" column.

The sad thing is that she was really looking forward to it, probably since she realizes she's benefited from donors via IViG.

Guess I'll try to donate twice as much. . . .

Sorry to hear that. I have also read something somewhere to say if u have ITP u can't donate blood.

I used to donate blood on a regular basis prior to being dx with ITP. The way it was explained to me was that although her platelets are stable she may still have the antibodies in her system and when its given to another person it can cause temp ITP in them. Like if her blood was given to someone who was in a car accident you wouldnt want them to have a low platelet count. If that makes sense to you.

That question has never really been answered reliably. I believe though that once a person has the antibodies, they may always have the antibodies and donating might just do the donee more harm than good.

I know for a fact that those who are spleenless cannot donate anymore. I found that out when I called to have my name taken off the Bone Marrow Donation list.

What you said about donating twice as much really struck a chord with me. I was always a blood donor, but not as faithful at it as I should be. (I'm O neg and CMV neg, so everyone, even vulnerable newborns, can have my blood.) Once my kid was diagnosed, and I knew how she benefited from IVIG, and may one day need blood or platelets, and that one potential donor was now ineligible, I stepped it up. I still haven't given as often as I could, but I started this year with that goal. I gave in December, and can give again next week. My dad was a faithful donor in his younger years, but now has a condition precluding him from donating. Since some can't give, those of us who can really need to work at this.
Norma

I am spleenless and they still LOVE taking my blood! (I don't have ITP.) I, too, am O-/CMV-. And I became a donor at my ITP daughter's request... Share the love--Share the blood! Ann, Caitlin's Mom

These are the questions asked before giving blood in England and Wales. The NHS has around 1 week of stock for the different blood groups. Between Jan 14th and 24th stocks halved.


Are you aged between 17 and 65?
Have you already given blood in the last 16 weeks?
Have you got a chesty cough, sore throat or active cold sore?
Are you pregnant or a woman with a baby less than 9 months old?
Are you taking antibiotics NOW or have you finished taking them within the last 7 days?
Have you had hepatitis or jaundice in the last 12 months?
Have you had acupuncture, ear piercing, body piercing, tattooing or semi-permanent make-up in the last 4 months?
Have you received blood since 1st January 1980?
Have two or more members of your family (parent, brother, sister, child or other blood relation) suffered with CJD, variant CJD or other prion associated disorder?
Are you HIV positive or do you think you might be HIV positive?
Are you a carrier of the hepatitis B or C virus or do you think you might have hepatitis?
Are you a man who has had oral or anal sex with another man (even if you used a condom)?
Have you ever received payment for sex with money or drugs?
Have you ever (even if it was a long time ago or only once) injected or been injected with drugs including body building drugs?
Have you had sex during the last 12 months with someone who is, or may be, HIV positive, or a carrier of Hepatitis B or C?
Have you had sex during the last 12 months with a man who has had oral or anal sex with another man?
Have you had sex during the last 12 months with someone who has received payment for sex with money or drugs or someone who has injected drugs including body building drugs?
Have you had sex during the last 12 months with someone who has been sexually active in parts of the world where AIDS/HIV is very common? This includes countries in Africa
Have you had a serious illness or a procedure in the past or are you on medication at present?
Have you had complicated dental work (simple fillings and scale/polish are OK after 24 hours, simple extractions are OK after 7 days).
Have you been in contact with an infectious disease or been given certain immunizations in the last 8 weeks?
Are you presently on a hospital waiting list or undergoing medical tests?
Have you been outside the UK (including business) in the last 12 months?
Have you ever had malaria or an unexplained fever associated with travel?
Have you ever stayed outside the UK for a continuous period of 6 months or more?
Have you visited any malarious area in the last 12 months?
Have you ever visited Central/South America for a period of 4 weeks or more?

have most of us, had been given platelets so we cant donate

Blood disorders or bleeding tendencies: can not donate

Taken from www.bloodbook.com/donr-requir.html

Found this while revising the FAQ's on this site:

Q: Can an ITP patient donate blood?

A: No, the American Red Cross will not accept a blood donation from a person with ITP.

www.pdsa.org/discussion-groups/5-newly-diagnosed-a-frequently-asked-questions/118-frequently-asked-questions.html

I understand your daughter's disappointment in not being able to donate blood. I have lived with ITP for almost 21 years now, since the birth of my own daughter. I had been a regular donor prior to my diagnosis.

I have been the coordinator of our office blood drive for several years now. I cannot give blood because of my condition, but it does not keep me from encouraging others to do so. I share my own story about my ITP (3 times in 21 years) and the difference that a double dose treatment of IVIg I received during the second bout meant to the length of time and level of steroids I was on meant. One year of treatment vs. 4.5yrs and the dose of steroids was much lower, much quicker. IVIg is a treatment that comes from the blood of many donors.

When God closes a door, He opens a window.

Hey I was wondering if there's anyone here who wants to give blood but they can't because they received blood since 1980??
I'm making a short documentary film about this subject and would really like to talk to people in this situation.
Please email me malcolm.kirsty@gmail.com

kirsty i think you'll find that while some people here have received blood (and therefore can't donate under current regulations), most people on here can't donate because either their platelet count is too low for their blood to be of any use to people who need a blood transfusion, or we've received medical treatment which puts a ban on us donating.

I was told by the NHS that as I've taken steroids that I can't donate for 5 years (so have to wait until at least 2014 before I can donate again, and I need to see a substantial improvement in my platelet count compared to what it is at the moment) and if i have to take a second round of them, then I can't donate ever again. So I've pretty much resigned myself to the fact that I'm not suitable, and instead I encourage my friends and family to donate.

My mum received a blood transfusion in 1986 when she lost 5 pints giving birth to my brother. She's not been able to donate since - I presume it's people like her that you're after. With the exception of parents of kids with ITP who might've had a blood transfusion in the last 31 years, I don't think you're going to have much luck here. Sorry!

My son was diagnosed with ITP at the age of 13. Shortly after dx, he received an IVIg. This was back in 2007. In 2010, he was able to donate blodod, and in January of this year, became a repeat donor. It solely depends on the orgnaization doing the collections. I checked with several people within Carter Bloodcare, and he was cleared to donate. Like many ITPers and their families, he understands the importance of donating and was very happy to find out that he would be able to do so. There are two different ways to donate, and he does the one that just his red blood cells (I believe) are used. I am sure that makes the difference.

Deaun

Wow this thread was last posted in a year ago - how long did it take you to find it kmalc?

You say in your profile you are in the media so you have no ties to ITP right?

May I ask what country you are in and what country you are from?

May I ask why you are making a short documentary film about someone not being able to give blood because they have received blood since 1980??

May I ask you for whom you are making this documentary?

May I ask why you came to this site to have people email you?

I think you should be giving some explanations before anyone here emails you!
And I hope people don't respond to you via your gmail account since we don't
know who you are.

If you go to the American Red Cross site you will see:
www.redcrossblood.org/donating-blood/eligibility-requirements/eligibility-criteria-alphabetical-listing
Blood Transfusion
-Wait for 12 months after receiving a blood transfusion from another person in the United States.

-You may not donate if you received a blood transfusion since 1980 in the United Kingdom (England, Wales, Scotland, Northern Ireland, Channel Islands, Isle of Man, Gibraltar or Falkland Islands). This requirement is related to concerns about variant CJD, or 'mad cow' disease

-You may not donate if you received a blood transfusion in certain countries in Africa since 1977. This requirement is related to concerns about rare strains of HIV that are not consistently detected by all current test methods. Learn more about HIV Group O, and the specific African countries where it is found.


So actually if you look at what the Red Cross site says then you do not have your facts straight, it says "You may not donate if you received a blood transfusion since 1980 in the United Kingdom (England, Wales, Scotland, Northern Ireland, Channel Islands, Isle of Man, Gibraltar or Falkland Islands)."

Good questions Melinda, and for what it's worth I totally agree. If I can educate someone on ITP I am more than happy to do so but I would like to know who I am talking to first.

Melinda, I would guess she's targeting people in the UK. I don't know how things are in America, but over here, our hospitals seem to be operating on a bare minimum of donated blood and stocks are hardly overflowing.

www.blood.co.uk/StockGraph/stocklevelstandard.aspx

According to their stats, only 4% of the UK population are registered as blood donors. At the moment, they're very very short on O neg.

This crops up in the news from time to time here, and there's the debate about whether the shortage of donors is compounded by such stringent regulations on who can and can't give blood, e.g. sexually active gay men (even if they're HIV negative and regularly get themselves tested) and people who've received blood after 1980. My mum was a regular donor right up until my brother was born.

I would imagine the documentary is to investigate whether it's perhaps time for this policy to change.

Milly I just feel none of us should jump into sending someone an email just because they have posted on this site. I don't feel this person isn't here because of ITP, that was never stated in his post.

Aurehsalla if he is targeting people in the UK then he should say so - if he is doing a documentary to investigate whether it is time for the UK to change the policy about who can/can't give blood then he should say so. He should also say who he works for [his profile says "A member of the media"].

I don't think we should be so ready to jump in to sending an unknown an email just because he has posted here and says he is writing a documentary. Facts should be given first.

Sorry the UK is having a shortage of blood donations - that happens here a lot. I wonder why you can't donate for 5 years after having steroids.

Hey Melinda, I would never reply to an email from someone unknown and I think if this person is after information this is probably not the right way to get it, explain what the documentary is about and who they represent.

Melinda wrote:

Aurehsalla if he is targeting people in the UK then he should say so - if he is doing a documentary to investigate whether it is time for the UK to change the policy about who can/can't give blood then he should say so. He should also say who he works for [his profile says "A member of the media"].

I don't think we should be so ready to jump in to sending an unknown an email just because he has posted here and says he is writing a documentary. Facts should be given first.

Sorry the UK is having a shortage of blood donations - that happens here a lot. I wonder why you can't donate for 5 years after having steroids.

I don't think anyone here would email without more information - it's more that I don't think anyone here will be of any use.

The very same message is probably on lots of other forums and places like yahoo answers - you post it in the hope that eventually some people will get back to you. I used to moderate a forum (site owner didn't renew the site this year, so haven't since it stopped working) and on that one you couldn't start a new thread of your own until you'd made 15 posts in other topics - so it's often easier to just drag up an old thread.

I believe we may find she is legit. The younger generation is more accustomed to giving out personal information and communicating with strangers, which always worries me about my children. Malcolm, you need to give the folks here some credentials, who and what you are, so they will know you are legit, and feel okay about communicating with you about your project. I'm sure you can understand the folks here are vulnerable to exploitation at times, in their need to find answers and remedies for themselves and their loved ones.
Norma

Why do we need to e-mail when we can just answer on here?

I can't donate any more because I've had a splenectomy. Nor can I be a Bone Marrow Donor like I used to be on a list for.

By all means answer here (or send a PM), but I don't think any of us are suitable candidates to answer the question!

Melinda, I've just re-read your initial barrage of questions, it does come across a bit agressive and accusing - he hasn't asked anyone for their home address or bank details! Wouldn't have hurt to say "before we reply to you, could you please give us a bit more information on the documentary, who it's for, where you are, what details you'd be asking of people, what you're hoping to achieve etc etc".

What harm can possibly come from answering a very simple question such as "have any of you been prevented from donating blood because you've received a blood transfusion since 1980?" - I would like a logical, rational answer, not some fantastical justification that by answering that question to someone's personal email that they're going to hack into your computer, work out where you live, kidnap your children, rinse out your bank account and burn down your house.

Go and stick that email address into google - this is what you'll find:

www.kirstymalcolm.com/portfolio/ - delve a bit further and you'll find an abbreviated version of the same question on her twitter feed:

twitter.com/kirstymalcolm

Hi there,

It's great to get some replies! I'm glad people are still interested in this thread. Part of commenting was to see if people were still interested which is good.
So I'll give you all a bit of background about myself. I'm an MA broadcast journalism student at City University in London (UK). I'm scottish and did my undergrad at Glasgow.

The project I'm working on at the moment is a 5-7min documentary on the issues connected to blood donation and more specifically people who cannot donate because they have recieved blood since 1980.
The reason people can't give blood is the risk of vCJD (mad cow disease).
According to a lot of the reseach I've been doing there are new tests being developped that aren't being implemented by the government even though they could be.

I'm trying to learn more about people who have given and received blood for various reasons and what they think about the rules. What drives people to give blood, and how blood has changed people's lives. I'm also very interested in what people in fact do and don't know about the risks of blood donation and transfusions.

The girl I'm working with on the project (also a student at City) wanted to give blood, but only found out when she got to the blood drive that she couldn't because she herself had a transfusion as a baby. This was the starting block of the project.

I hope that helps with a bit of insight.

Kirsty

And yes it's all about connecting with people over social media. It's a great way to meet and interact with people these days.

I've just been re-reading recent posts as many more have come up while I was writing that response !
Yes aurehsalla it was quite intimidating with all the questions but I understand as it can be a sensitive subject.

There is a shortage here in the UK and the number of donors is going down and down.
There are new studies which aren't being publicised very much about how to test blood.
Pretty much every person I talked to in person did NOT know about the 1980-1996 rule.
This is also going to be very interesting as many people born after 1996 will soon be able to give blood.
At the moment all the blood we use here in the UK is mixed with plasma imported from the US. (As far as I know). This is to decrease the risks of vCJD.
The US and many other countries don't accept any blood from people who even lived in the UK from 1980-96 yet we all have to use it, or we'd just have no blood.
This raises a number of questions here, what will happen when the teenagers are able to give "safe" vCJD blood? Will they donate? Will there be a huge drive?
Should we be using the UK blood at all or should we be trying to import regardless of cost?
Why do people donate and what does it mean for people who need blood?
ETC...

Kirsty thank you for your replies - I did not mean to sound "agressive and accusing" as aurehsalla implied I was . The thing is I have been on this board a long time, I have seen quacks and spammers and trolls - I get suspicious, so it is just my opinion that before anyone send an email to someone that they know the facts.

However my biggest apology is I'm sorry I called you he not she! It was very late here when I posted.

So you are looking for responses from people only in the UK?

vCJD is also the reason why people in the States can't donate blood if they were given a blood transfusion while in the UK since 1980.

The new tests you mentioned are they used to determine if someone is a carrier & therefore can't donate? What a shame if there is a way to determine this that it is not being used.

It is frightening the shortage of blood in the UK that you mentioned.

No offence intended Melinda and I hope none taken - there's being sensible and putting your guard up and then there's building a fortress I am also skeptical of anyone peddling any sort of miracle cure or treatment!

I also hadn't realised the 1980-1996 rule and that in America it applied to anyone who'd lived in the UK during those years - all I knew from my mum's experience is that once you've had a blood transfusion, then you can't donate. I was wondering if adults who've received blood since 1996 (and not before) are able to donate?

Kirsty - I've asked my mum to email you. i think she's interested in answering some questions although not sure if she'll want to be filmed. I'm pretty sure if they lifted the ban on her, she'd go back to donating tomorrow. I'm not sure if she's the same blood group as me, but I know that I'm A negative, which is 7% of the population - pretty rare! If she'd been able to carry on donating as usual, that would've been another 75 pints they would've had. All adds up!

I'm glad you two worked it out. I was worried there for a minute.

Kirsty - some of us have been here for a long time and have seen many scams and con artists at work. We actually had someone pretend to be a Priest with ITP once and when he said he couldn't afford treatments, people from the Forum actually sent him money. Someone did some good investigating and found that he'd been arrested for scamming many people all over the US. So yes, we have some very suspicious members here (including me), and rightfully so.

Normally, things like this should be cleared by the PDSA before it's posted. Since you are not asking for or promising compensation though, I think it would be okay if you started a new thread in the Social Section and asked your questions there. Those who want to respond can and those who do not want to, won't.

Let's please end the conversation in this thread though for now, since it's not directly related to the original topic.