World Sickle Cell Appreciation Day

So its time of year again!!!  Today is the 19th of June!!! WSCD – World Sickle Cell Day!!!! 

In 2008, the General Assembly of the United Nations decreed that 19th of June every year going forward would be World Sickle Cell Awareness day.  This was done to recognise Sickle Cell Disease as a public health concern.  So every year I try to contribute towards spreading awareness to the disorder.  This year has been a little different.  I actually did physical stuff!!!  Fine….. it wasn’t on the actual day…….. like a week before but hey I did something :).

So last weekend – on the 11th of June – I was involved with the Red Umbrella Walk for Sickle Cell.  Now I’ve always been wary of these activities within Nigeria because sometimes I feel that the main focus is about prevention as opposed to how to we are people who have/know people who have the disease live with the disease.  I was pleasantly surprised!!!  From my point of view the walk pushed the following agendas;

  1. Awareness of the condition – know your genotype!
  2. Pushing forward that people with Sickle Cell are people too, they can achieve just as much as the average person – they just need to find a different route.  One of the lines they kept saying was a person with Sickle Cell could also be the next Governor of Lagos State. *Shrug* that shit makes me smile 🙂
  3. Bringing awareness to much needed Blood drives – dudes!!  We need for you guys to share your blood 🙂

Overall it was a wonderful experience and I intend to get more involved into what is happening within that space within Nigeria.  I was all fuzzy and happy…… until last night………

Awareness is multifaceted.  As I have said before, awareness of this disease is not just about prevention but also needs to be about how we as Sicklers live with the disease.  Sadly, it is also very apparent that Doctors need to be aware how to manage this disease.

I’ve said from the start – of this blog – that I am a privileged Sickler.  My parents are both medical so  my management as a Sickler has been an ongoing discussion/priority.  Happy Father’s day Dr Oshinowo – Love you long time (yes I shamelessly plugged that in).  My parents have empowered me to ask questions, understand my body and DEMAND treatment when I need to.  For that I will always be grateful.  Unfortunately many others do not have the support that I have from my parents. 

Case in point last night.  A fellow Sickle Cell advocate had gone to visit a friend at a hospital in Lagos.  To say that she was pissed off with what she saw was an understatement.  Long story short – there was no Sickle cell protocol being followed and pain medication was being withheld because the Doctor didn’t want the patient to become dependent on pain medication.  No amount of swearing can contain my annoyance at situations like this……… I’m annoyed on two fronts

  1. The doctor did not know how to treat a person with Sickle Cell, due to his ignorance on the disease
  2. The doctor did not want to listen to the patient because “I know best” “Don’t you know who I am” “I’m the doctor here”

We are all human, and we can’t know everything but when you are in a position of responsibility – like being a Doctor – at some point you need to listen to your patients.  Sicklers in this country die needlessly not totally due to Sickle Cell but due to the ignorance of crisis management and poor knowledge of long term side effects. 

So for any Sickler that is reading this I would like to share with you my Sickle Protocol for when I have a crisis bad enough that I need to go to the hospital.

  1. Pain Medication.  Usually for me to get to the hospital I have been hoping Tramadol like Skittles with no comfort so at that point it usually means a combo of Morphine IM, Diclofenac IM, and Paracetamol IM.  I’ve found that over the years my body responds better to combos.  As a person with Sickle Cell it is your responsibility – not even your Drs to know what works best for you.  To do this you need to have a close relationship with your healthcare provider – go for appointments.  Also its just not about the opiates!!  There are various ways pain meds can be administered that can help in a crisis i.e. instead of a large dose of say paracetamol IM injection….. dilute within an IV and titrate over a long time period to take the edge off the pain.
  2. Slap on an Oxygen mask – the oxygen helps reduce cell damage which.  I do intend to write about oxygen and Sickle Cell crisis soon…… just wait for it
  3. Hydrate!!!  So there are two options for that.  Set up an IV or once the pain meds have been administered start drinking like its an olympic sport
  4. The top three are the most important but there are other things that can be done to help manage the pain like heating mats, hot water bottles, deep heat rub etc.

A crisis doesn’t just end at the point of pain administration, so even if a couple of hours after a crisis a Sickler tells you their fine and they want to leave……… heck no, strap them down!!  The Oxygen and Hydration needs to continue a little while longer because hey thats what caused the crisis in the first place.  Don’t just pack them off on their way and then be surprised when they come back.  There could be other underlying reasons why they are having a crisis other than lack of Oxygen and Dehydration.  They could have an infection – maybe a start of a touch of Malaria.  Investigate!!!!

So long story short – those that live with Sickle cell need to be aware about their disease and know that they have the right to demand what they need in a crisis.  Doctors in Nigeria – hell all around the world need to be sensitised the needs of a Sickler in a crisis.  Your fear on creating a drug dependency is unnecessary and frankly you could be putting that Sickler at risk.  Solution – Listen to your patients!!  We have more experience on this disease than you do.

Okay enough of my rantings!!!  Enjoy what is left of World Sickle Cell Awareness Day and Father’s Day!!!!