For years I had wanted to give blood! When I was 25, I went with a group of friends from my church to give blood for the first time together. I have family and had read lots of articles about the need for blood donors who are from ethnic minority groups as they are less likely to donate.
Let me set a bit of background so I do not put people off donating blood as it is very important! I was born in the 80s (I know, unbelievable hahahaha). At this time sickle cell was screened for in newborn babies. at this point however, only the HbS gene was screened for as other haemoglobin disorders were not as widely known. So, when I was tested as a baby, it showed that I was a carrier (only had 1 of the sickle cell genes) and therefore was unlikely to suffer from any symptoms but could pass this gene on to any future children I had.
So, having spent most of my life knowing I was a carrier and having a few unusual symptoms in my early 20s but knowing it was possible to have the odd symptom even though I did not have the full disorder. Giving blood I thought would be ok as my cells are not really affected and I never suffered with anaemia I would have no problem.
We turn up, fill in the forms, have the iron count and then wait to be called. A unit of blood later, I'm sat having the obligatory biscuit and juice post donation, waiting for the others to finish. From memory, not all of us could donate as I think one or two of the group were borderline anaemic so were not allowed to donate.
Fast forward a couple of months, I am suited and booted at a training session titled "Moving into Pastoral Leadership". We had just returned to the session after coffee break when my phone rings. I did not recognise the number, so I excused myself and answered it. That call changed everything. "Your blood has been processed in Sheffield and unfortunately we have found something. You have sickle cell disorder we call HbSC and have referred you to the haematology department in Leicester for tests and reviews. We have sent you a letter with further details, a card for you to carry and we have discarded your donated blood."
What? I had what? after all those years of being told I had growing pains and strange symptoms suddenly; they were not strange. But how could we not know? My baby brother has it and we knew that and there is only 8 years ish between us...
I turn up at Leicester Royal Infirmary for my appointment, I have a blood test then I am seen by the haematologist and given a little card with my blood type, typical haemoglobin concentration, antibodies, consultant's name and hospital number.
So that was that! My diagnosis story!
Information about newborn screening: