Did you know women are twice as likely to die from asthma than men are?
Living with asthma is horrible. To keep it stable there are so many considerations you need to think about compared to someone without asthma. For me my mind is always racing and I am checking my surroundings to make sure there are no triggers that could potentially provoke and asthma attack that lands be back in hospital or worse intensive care.
If you live with asthma think about all the things you do to manage it. The triggers you avoid, the preventers you take, then the relievers you take if you are accidentally exposed to a trigger and then how you move on with your day hoping that you are not exposed to anymore tiggers.
What happens when you cant get away from a trigger? You just have to continue suffering and fighting for breath until finally the trigger goes away. This is what happens to some women with asthma every month. You cannot escape your hormones, you cant protect yourself from the effect they will have on you. Many women live with a feeling of impending doom each month, and they are helpless to do anything that prevents it because there is nothing, no treatments, no prevention but worse there is no understanding or research about why female sex hormones negatively impact asthma so much for some people but then for others their female sex hormones play no role in their asthma control.
I spoke to a few journalists about my experience of hormones and their effect on my asthma. It is strange because until I spoke with Asthma + Lung UK about their women with asthma campaign I had always just sort of accepted that perhaps hormones did effect my asthma but it was just something that I had to deal with. Now though I realise how unacceptable that is and why something should just never be something we need to put up. Fair enough it might be something we just need to deal with if the area has been fully researched, fully understood and there is nothing that can be done however as the report highlights women have been failed.
I was someone who you could say was a late bloomer. I didnt go through puberty till I was 15 or 16. My asthma was bad at this point and Im not sure what made it bad because at that age I was in school and sitting my first major exams so there was increased stress and pressure on me which could also have caused my asthma to be more difficult to control. I have been pretty lucky as my periods and hormones did not have a huge impact on my asthma. It did contribute a bit and you could see a downward trend in my peak flow around the time my period would be due but it didnt register with me. In fact life went on like this for many years. Part of me thinks it is because I never wanted to speak to anyone about hormones or periods. To me it was embarrassing (and Im sure I am not alone in feeling this) and didnt need to be spoken about. I had also only ever had male Dr’s and consultants. Lets face it unless they are used to it they will not bring up anything that might make them feel awkward and also they don’t have to contend with periods etc so it is not at the forefront of their mind when looking after someone. It was not until I had a female consultant and she decided to look at all aspects of my life and how it impacts my asthma, this included my hormones and periods. With that she then sent me to a gynaecologist and we tried many different things to stabilise my hormones to remove that aspect from my asthma. I have since been on injections every 12 weeks which help keep my hormones stable. While my asthma is still very severe and there is no way I can consider it controlled but that aspect of my asthma has become more controlled. There is no longer the impending doom each month that things might go down hill. Now I just need to try and find others cures/ ways to manage the other aspects that cause my asthma to be so uncontrolled.
The only thing we actually understand is that female sex hormones affects women with asthma to varying degrees from no impact at all to triggering fatal asthma attacks and women dying as a result. Historically there has been this theory that if you are a woman with asthma who falls pregnant then 1/3 of women will have no change in their asthma, 1/3 will experience worsening asthma while 1/3 of women will see an improvement in their asthma. I have no clue where this theory has come from and no idea if it is factually correct but it seems to be something that has been accepted. It is strange to think that I have never felt the need to look up and fact check this, any other statement about asthma I have always looked up online and checked everything to try and learn more. Of course sadly if I did look it up to clarify the statement I would not have found much as there is so little research about the impact of female sex hormones on asthma.
Asthma + Lung UK put a funding call out last year to help generate more research into understanding the role of female sex hormones in asthma. It is exciting that this funding call was really popular and hopefully there will be a few studies looking at different aspects of asthma and female hormones. For me the key areas of research that are needed are:
- Understanding the role of female sex hormones in asthma
- Managing asthma when female sex hormones negatively impact the women life
- Developing medications to inhibit the negative effects of female sex hormones on women with asthma
- Preventing female sex hormones having a devastating effect on women with asthma
The first key piece of research is understanding female sex hormones more and their role in asthma. I am hopeful that with all the data that is now collected in severe asthma registers across the world there might be enough data to potentially identify common phenotypes which make someone high risk for their asthma to be impacted by the female sex hormone or if we cant identify phenotypes then hopefully we may be able to identify common characteristics among females whose asthma is or is not impacted by female sex hormones. That way we can highlight to people that they have these specific characteristics which means their hormones have a likelihood of making their asthma worse but we will hopefully be able to offer a treatment as well so people are not having make accommodations for their asthma once a month and not be able to carry out their normal life.
I hope that now there has been this campaign and report from Asthma + Lung UK women with asthma will not be forgotten. Our needs will be met and the shocking statistics for women with asthma will be reversed. It will no longer be women who are twice as likely to die from asthma than men. In fact I hope soon no one will die from asthma but I accept that we need to take a lot of steps to address a lot of different aspects in society and medicine for that to happen but as long as research is being done and the research being done has a direct positive impact on people living with asthma.