Attending a Sickle Cell Support Group, I left (once it had finished) feeling quite angry. Feeling like a non-entity, as though I didn’t really matter.
Much of the initial 30 minutes, was taken up with discussing the lack of attention or concern that is shown for people of Sickle Disease and what it is that we have to go through in our lives, which I totally agreed with. Only to be met by the second half of the discussion where we were made aware of clinical trials of new medications to hopefully be made available. The clinical trials are all very good but my anger was at the fact that it is only for people who are carriers of HbSS and NOT HbSC. It is thought that HbSC carriers don’t have many problems. Some do not have any problems or are only aware of themselves being carriers when they have reached the age of 60 years old!!! Well, lucky them! I have HbSC; have had a stroke; have (too frequent) crises; have epilepsy, as a result of the stroke (apparently); have Avascular Necrosis in both shoulders; have stage four proliferative sickle cell retinal; and deafness in both ears (more so the right, being investigated now even though I’ve had it for approximately 12 years): But, yeah, I shouldn’t be considered for a trial!!! I know I’m not the only one with HbSC that has this many problems, because two of my brothers have HbSC. One doesn’t appear to have problems but it’s hard to decipher because he has another illness, which I won’t go into here, but my youngest brother seems to be going through a stage where he’s having very frequent crises. It’s not, by any means, something that can be ignored or forgotten about! In my view this should be looked at in a case by case manner.
Symptoms of Sickle Cell
- Anaemia – red blood cells cannot carry enough oxygen around the body, because of its sickle shape;
- Blood clots – the abnormal cells clump together and block blood vessels;
- hands and feet (mostly in children)
- Ribs and breastbone
- Spine
- Pelvis
- Tummy
- Legs and arms
- Lethargy
- Joints
- Bones
Additional symptoms
- Acute Chest Syndrome;
- Increased risk of serious infections;
- Leg ulcers;
- Pulmonary Hypertension;
- Strokes and Transient Ischaemic Attacks (TIAs);
- Swelling of the spleen; and several other things
I obtained this list from the NHS website, so that I could provide a fuller list, but it isn’t extensive. There are probably many other symptoms that haven’t been recorded. These are the ones to their knowledge. I say this because symptoms that I have had do not seem to have any apparent reason (or maybe I’m to personally put it down to the Sickle Cell), I know I’m not imagining things!
Personal Affect
Over the years, as a single mother, I’ve always dealt with crises by myself, rather than go to the hospital. I can count on my two hands the numbers times I’ve gone in, not because there was no severity to the pain but because I didn’t want to. Some may say, my pain can’t have been that bad because I would have had to go in if it was, but that’s not the case! If you feel you have no alternative but to manage at home, then that is what you do. I am by no means complaining because that was my decision, as I had responsibilities. I’ve used hot-water bottles, self-medicated (which doesn’t seem to work), prayed and cried myself to sleep, too many times. I suffer in silence but by the grace of God, I’m still here! When I say the medication doesn’t work, I have to take it for days, maybe five, before it takes effect, and the pain starts to subside; to this day, I’m not sure if it’s because the pain is ready to go or if the medication is starting to work and the Crisis comes to an end. The pain is so bad that I have to slide along the floor to get to the toilet or downstairs but still that’s not enough to be considered to take part in a trial. Then there’s the lethargy…….What does one have to do or what has to happen before research is carried out for us (HbSC sufferers).
Admittedly, in my younger years, I may have had things occurring and felt anger at Doctors wanting to put everything down to Sickle Cell Disease, as though that’s the only thing that could go wrong with our bodies. However, It’s also quite disconcerting that not enough credence is given to every sufferer of this disease; realising that we are all individuals and we can’t all be batched into three groups: HbSC, HbSS or HbAC/HbAS (the latter two HbAC and HbAS are traits). A friend of mine has said that it goes a lot deeper than that and there are many other groups, but I’m not concerned with them. It may be thought that I’m being as bad as the Doctors, but isn’t it their job to look at these problems? Is that not what they are paid to do? If they don’t do it, who can? They have the resources and the knowledge to research these things. It’s obvious that research is not being done because neither myself nor my brother have done a survey or been asked any or enough questions. How do they collate their information in the first place? Do they just do a spot check of medical records and go with the majority, not caring about the few? Do all Doctors do extensive records of symptoms we are experiencing. I know there have been a few occasions when I have received letters outlining our appointments and things have been relayed differently to how I have said them.
Sickle Cell & Thalassaemia Network
Looking at a website for Sickle Cell and Thalassaemia Support, I found annual reports up to 2016 to 2017. We are now in 2021. I know we have to ignore last year but there are a couple of years in between the last year and where we are now. I am glad that it is being recognised that sufferers of this disease require support. Are things moving too slowly? I believe they are. Sufferers are not even recognised as needing to have a good supply of pain medication, so do not receive free prescriptions. However, we were recognised enough to be considered as vulnerable and needing to be locked down. Vulnerable only in some instances! On one hand it is recognised but on the other we aren’t. Why? In the past year, for several months, I have seen (for the first time), adverts about Sickle Cell Disease! They are a good thing but they need to provide just a bit more information, other than the need for blood. There have been a few occasions where Doctors have spoken up on the news and a mention has been made on soaps. Good, but still not enough. If you were to stop fifty people on the street, and give a list of a few diseases, the majority would not have a clue what Sickle Cell Disease was or if they had heard the name, wouldn’t have bothered to look it up. Apparently the Sickle Cell & Thalassaemia Network has been around for 40 years but not much is known about them and what they actually do. They need to be our voice and start shouting in the right places! In a previous post I mentioned, Evan Nathan Smith, aged 21 years old, died whilst in hospital being ignored and not receiving adequate attention and treatment. This happened in 2019; not 10 years ago but just over one. My brother went to the A&E department of St Mary’s hospital, in Crisis, and was asked to leave…they didn’t feel he was sick enough to be there. He has also been to hospitals in Birmingham and elsewhere, but is treated as though he may not need medication (if you get my meaning!) This may have occurred in 2019. We are in the first quarter of 2021. Please let me know when things are going to get better!
Concluding
At the end of the day, it’s a sad situation because I, and others like me, didn’t ask to be born with this disease but we’re left to muddle on, accept and deal with what is thrown our way; the pain, the malfunction of our bodies all on our own.
Thinking Out LOUD, Unapologetically!
Unapologetically Marcia 