Blood feud

I’ve always wanted to give blood.  I’ve got nothing like an aversion to needles or fear of seeing blood.  I quite like watching it trickle into the phial every time I have to have some taken (which is quite often).  I love the colour of de-oxygenated blood from the veins.  Arterial’s a bit bright and claggy though.  Something has always happened to rule me out as donor.  Either I had a cold or an infection or a wound and was rejected.  So when the anaesthetist told me today that it might happen that I’d need some transfusion in a few days, I thought well, what’s my blood group and I’ll find out whether I’m allowed to give blood these days.

I suspected the answer would be no, and I thought it would be because I self-inject my serum of genetically modified hamster ovaries three times a week.  I knew that piercing the skin was something frowned upon by the donor clinics.  I’m a common as muck type O+, so my blood can be given to anyone else with a + type, be they A, B, AB or O.  My Mum, as a B+ could have had a transfusion from me, but I couldn’t have had one from her.  O type wants only O type back and the rhesus must be right.  So if you’re not O+, you’re no good to me. However, 85% of the country could use my blood.

So I phoned up the blood drive people and asked.  I said I just want to find out if I’m allowed to give blood yet.  I have Multiple Sclerosis and I inject with Interferon Beta 1a regularly.  The guy on the other end with a charming Irish accent (who sounded eerily like my neurologist but said sadly no, although he’d like the salary), looked up Multiple Sclerosis in the list and said “oop, nooo.”  Naturally I asked why.  He wasn’t able to tell me but he could tell me it was nothing to do with medication and was down to the condition itself.  That it might be for reasons of the impact losing a pint of blood might have on me as a result of the condition, but he couldn’t be sure.  He took my number and said he’d get someone to call me back.  I thought that might not happen and I started to think about what I could do about this.  I was ready to be quite indignant that surely it’s up to me to know whether I’m strong enough to lose a pint of blood once a quarter.

The phone rang about half an hour later and it was a doctor in Serology at Newcastle.  She explained that although they don’t think MS can be passed blood to blood, there’s no proof that’s the case so they currently can’t use my blood as it’s considered a potential risk.  Oh.  I told her that it seemed a shame but I understood and I told her that I was ready to start questioning the relevant people if it had been only for my protection, but that I supposed all I could do now was wait for someone to discover the full cause of MS or I could become a researcher and make it my mission in life.  

I then thought that it might actually be a good thing that I’d always been prevented from donating since I can trace this back 26 years although only had a name for it for 8 of those.  I suppose if I had been giving blood all these years, we might know whether it can be transmitted that way, but there must be undiagnosed polka-dot brainers out there who do give blood and no-one is any the wiser.  I’ve never had a transfusion, so I couldn’t point and say find out who my donor was and see whether there’s a link.  As far as I know, I got a specific gene (from my father), a lack of vitamin D (i.e. I live in England!) and I tried to crack my skull when I was 6.  To have symptoms by age 8, there are very few external factors that can be involved.  I didn’t smoke, I didn’t drink, I’ve never had measles and I didn’t get chickenpox until later.  Epstein Barr probably didn’t do it.  Even as a new-born I had a massive immune reaction to anything vaguely alien, so it’s probably always been there.  

Who do I have to tell this to?  How do I make the point that it’s something you’re probably born with but need circumstances and a trigger to close the circuit?  All I want to do is give blood.  I can pass on an army of Special Forces T-Cells temporarily, but I can’t pass on my entire immune system.  Even if I have a highly unexpected accident of fertility, there’s only a 12.5% chance I can pass it on.  Am I the only person with MS that can provide this level of information about my development?  I can’t be.  The answer has to lie in the information we give that they write down then ignore for the rest of our career as patients.  Maybe I should start shouting.  Maybe I should start compiling records and interviewing patients.  Maybe if I can find you’re born with the probability I can give some of my blood to someone that really needs it.