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Hughes Syndrome APS Forum

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Blood donations

dawnzy profile image
9 Replies

is it possible to pass aps on to other people through a blood donation I know this may seem naive but its a though that has processed in my head.

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dawnzy profile image
dawnzy
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molly1969 profile image
molly1969

I canonly tell you that i Was told by my specialist im not all'ordine ti give blood thats all i can say im afraid

dawnzy profile image
dawnzy

ok but what about pre diagnosis do we have a duty of care to inform the blood donors that in the past that there may have been an issue that we wernt aware of but now are. I am aware that the blood is screened but obviously not for hughes/APS.

MaryF profile image
MaryFAdministrator

I have heard it is a definite no, enough to make me remember as years back I realised I could not donate and had asked that question to a professional family member, medically trained. MaryF

baba profile image
baba

Lots of information on this site:

my.blood.co.uk/knowledgebase/

"Antiphospholipid syndrome - causing thrombosis : Thrombosis

You may give blood providing you have never had an episode of clotting and do not require anticoagulant medication to prevent clotting.

If you require anticoagulant medication (medication to thin the blood), we would advise you to check with our helpline on 0300 123 23 23, Monday to Friday, 9am to 7pm as we may need to transfer you to the Referral Team who can deal with more complex issues.

2: Antiphospholipid Syndrome : Auto-immune Disease

You may donate as long as:

You feel fit and well You have no associated heart problems You have not had any blood transfusion, plasma exchange or immunoglobulin treatment since 01st January 1980 You have never had a blood clot* You have no other related conditions apart from Raynauds Syndrome** (even if taking painkillers) and you must wait 7 clear days from cortisone/steroid injections You are not currently taking nor have you had any of the following tablets, injections or treatments in the past 12 months:

Azathioprine

CellCept

Ciclosporin

Efalizumab

Enbrel

Etanercept

Humira Injections

Hydroxycarbamide

Hydroxychloroquine

Hydroxyurea

Hydrea

Imuran

Infliximab

Methotrexate

Mycophenolate

Plaquenil

Prednisolone

PUVA

Raptiva

Remicade

Steroids by mouth

Steroid injections - slow release injections

(this does not include a single steroid injection)

Sulfasalazine

*If you have ever had a blood clot, please look up the guidelines for Thrombosis.

**If you also have Raynauds syndrome, the following medications will not prevent you from donating:

Nifedipine

Nicardipine

Amlodopine

Losartan

If you are a COMPONENT/PLATELET DONOR - There are some painkillers and Nonsteroidal Anti-inflammatory drugs that will affect you donating platelets. "

GinaD profile image
GinaD

I do not donate blood, or rather I stopped when I was diagnosed because – I'm no doctor – but it seems to me that as long as the connection between genetics and environment in the appearance of an autoimmune disorder is unsure, then I do not want to give somebody something that might be in my blood that might trigger an autoimmune disorder in the blood recipient.

Tofino5 profile image
Tofino5

I'm one who has experienced the false positive VD result, which is common among people with APS. The blood was donated, tested, and discarded.

I didn't find out I have APS until decades later. That was my second clue that I had a problem (the first was migraines).

A bit off the question but I thought it was relevant :-)

Lure2 profile image
Lure2 in reply toTofino5

Could you please tell me what a false positive VD result is.

Kerstin

Tofino5 profile image
Tofino5 in reply toLure2

Hi Kerstin,

It's an incorrectly positive result for the syphilis test. It isn't a way to diagnosis APS, but it can be a flag to say, look into this more deeply.

From - hss.edu/conditions_antiphos...

"In the 1900s, certain people had false positive test results for syphilis. This was a curiosity without clinical importance at the time, but rediscovered in the 1940s. By the 1950s, it was concluced that this false-positive syphilis test had something to do with lupus. Today, although it is known as a clue to diagnosis, a false-positive syphilis test alone is not sufficient to make a diagnosis of lupus or APS."

"In the 1950s and 1960s it was realized that the antiphospholipid antibodies had something to do with blood clots. In 1983, Hughes, Gharavi, and Harris developed a simple test for the antibodies called an ELISA. Clinical descriptions of various things that happened to people who had this antibody were also noted. In 1985, descriptions of what happened in pregnancy for people with this antibody were also noted."

Hope that helps.

Anita

Lure2 profile image
Lure2 in reply toTofino5

Thank you very much. Very interesting.

Kerstin

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