This post explores the possible reasons as to why I was diagnosed with Lupus. As I’ve said previously, no one in my family has it, so it came as quite a shock for me to be the first and only one (including my extended family) to be diagnosed with Lupus.
For my own learning, I decided to read in to the factors that may cause the immune system to attack itself. The research is not conclusive and it’s not really understood as to why this happens. Nevertheless, by sharing some findings I hope to educate and spread more awareness about Lupus.
I am a 24 year old Black woman who is of Nigerian heritage, and I had no previous health conditions or issues before the diagnosis. I’m only stating this because I want to highlight how being a Black young female may have increased the likelihood of me having Lupus; as age, gender and race have been found to be significant contributing factors for the onset of it. With that said, I would like to clarify that there is not solely one thing that causes someone to have this autoimmune disease, a multitude of factors exists which influence the development of Lupus.
Evidence suggests that female gender is the single strongest factor in predicting the disease (approximately 9 of 10 cases of Lupus are female). Research isn’t entirely sure why this is the case but it has been suggested that it may be because of the difference in genetics and hormones, as well as other environmental factors in comparison to males.
The peak age of diagnosis among women typically occurs during child rearing/reproductive years. It has also been found that Lupus shows a peak in incidence in post-menopausal women. The research has suggested that changes in hormones during puberty and menopause can explain why age is a factor in the development of Lupus.
Women of Black African origin are roughly 3 times more likely to suffer from the disease and develop Lupus at a younger age compared to their White or Asian counterparts. A women who is of Caribbean origin is however at a greater risk of developing Lupus than any other demographic.
Ethnicity doesn’t only affect the occurrence of the disease but also the way it presents itself. Black patients with Lupus are more commonly affected by discoid lesions than the other races.
Reasons for this are complex, it has been suggested that there is a difference in antibody patterns in Black and ethnic minority groups compared to White groups which could be a likely explanation. With that said, other factors such as healthcare inequity and other socioeconomic factors also have an impact.
Cases of Lupus tend to cluster in families; evidence has suggested that a 1st degree female relative of a person with Lupus may have a 6-fold risk of developing the disease herself. Research has also found high concordance rates (a measure of how probable two people who share genes will develop the same disease), amongst monozygotic aka identical twins at 24-69%. I am a twin but we are Dizygotic (non-identical) and the chances of my sister developing Lupus are considerably less likely at 10%.
There is not one gene responsible for causing Lupus, rather the literature has demonstrated that many genes are involved in determining the disease and this is known as Polygenic inheritance
Socioeconomic factors can play a significant role in disease manifestations and mortality. This occurs in terms of access to healthcare, quality of care (public or private healthcare) as well as compliance with care. However, further research is required to investigate the relationship between the above environmental influences as well as other factors such as behavioural habits (smoking, drinking, lack of exercise etc.) in the cause of Lupus specifically.
I’ve only touched on a few factors but there are many things that are involved in the development of Lupus. And to further iterate age, gender, ethnicity, genetics and environmental factors do not occur in isolation. It is very likely that all factors play a role in the manifestation of Lupus and other autoimmune diseases.
If you want to know more information about it, https://www.lupusuk.org.uk/ is a great resource.
So how does this all impact me?
Now that I have learned to manage the Lupus a bit better, I feel as though it doesn’t have such a significant impact on my life. There is no cure for it but the only thing I can do is to prevent new skin lesions and limit scarring. I have to stay on top of things such as standing in the shade, wearing a hat, topping up my sunscreen, taking medication and using my creams, which, in the grand scheme of things isn’t that big of a deal.
However what I didn’t realise is that I cannot and won’t ever be able to donate blood. Here’s some context:
I signed up to be a blood donor back in June 2017, this was during the time that I started having issues with my skin, and it wouldn’t have been wise to try and donate blood when I was undergoing investigations about my health. Well, the years passed by and if I’m honest I completely forgot about donating.
But very recently, I have been supporting Kickoff@3 and the African Caribbean Leukaemia Trust (ACLT) with their charity event this month to raise money and most importantly awareness of the need for more black blood and stem cell donors.
Doing so, inspired me to think about donating blood again and I signed into my online account to book an appointment. I completed the health questionnaire but it informed me that I had to call up and speak with someone directly to ensure it was safe for me to give blood whilst having Lupus. I proceeded to call the following morning and unfortunately was told that I am ineligible because of the medication I take. As it currently stands I will be taking this medication for the rest of my life which means I cannot be a blood donor.
This is a real shame because it’s a fact that more Black blood and stem cell donors are required, and as a Black person I really wanted to help. Although I am unable to give blood I would still like to help in other ways and I figured the best way I can do that, is by spreading awareness.
So if you haven’t already signed up online and registered to be a blood and/or stem cell donor please do at blood.co.uk. It is very important that people from the African and Caribbean community do sign up, register online and start donating.
I hope you found that informative and learned a thing or two.
If you have any questions, please do feel free to drop me a line 🙂