Women and Parkinson’s: closing the gaps in research and care
Around 40% of people living with Parkinson’s in the UK are women. But we’re learning that women’s experiences of the condition present different challenges which have not been addressed properly in research.
Hero image by Barbara Salsberg Mathews as part of a series of illustrations reflecting the experience of women with Parkinson's.
Research has found that women often experience health conditions differently to men, and receive poorer healthcare.
For instance, while men often have chest pain during a heart attack, women are more likely to present with nausea, fatigue, or jaw pain. These differences mean heart attacks are often recognised and treated later in women. As a result, women in the UK are twice as likely to die in the 30 days following a heart attack.
This ‘sex and gender health gap’ also exists in Parkinson’s and now, thanks to a growing movement of women sharing their experiences, we are beginning to better understand how the condition affects women and their unmet needs.
What do we mean by ‘sex’ and ‘gender’?
- Sex refers to the biological differences between men and women, such as reproductive organs and hormones
- Gender refers to differences in social roles, norms and relationships, such as women being more likely to take on caring responsibilities, to be paid less etc
Both sex and gender influence our health and should be taken into account in research.
Differences in symptoms and progression
There is growing evidence that women experience the condition differently to men. Recent research suggests that women:
- face greater delays in getting diagnosed
- are more likely to have tremor as one of their more dominant symptoms
- have more anxiety, depression, pain and fatigue
- experience higher levels of medication side effects such as uncontrolled movements known as dyskinesia
- may be more likely to experience dystonia - severe muscle cramping - as a symptom
- experience more symptom fluctuations and earlier wearing off of medication
- are less likely to have deep brain stimulation surgery
Understanding the impact of hormones
The influence of hormonal changes on Parkinson’s is another important topic which has been brought to light by women reporting their experiences.
This has led to large scale surveys which have revealed that:
- around 50% of women experience worsening symptoms during pregnancy
- up to 80% of women often experience a worsening of symptoms around their periods and up to 40% report that their medication is less effective
- women going through menopause find it difficult to tell whether the symptoms they’re experiencing are Parkinson’s or the menopause
Research into the impact of hormonal changes on Parkinson’s has been extremely limited and as a result treatment, care and support is a major unmet need.
The real life impact
Kirsten, 51, was diagnosed with Parkinson’s at the age of 49 but her symptoms may have been masked by the menopause for at least 2 years.
“I kept going to the GP with problems like fatigue, anxiety, depression, muscular aches and pains but each time they just said it was menopause and increased my hormone replacement therapy (HRT) prescription.
“It wasn’t until I developed a tremor that they considered it might be something neurological. When I was finally diagnosed with Parkinson’s and I started medication it did help with my physical symptoms like the tremor and stiffness but I still struggle with my fatigue and my mood.
“I wish there was more awareness that the symptoms of menopause and Parkinson’s can overlap, and there were better treatments available for the non-motor issues."
Read more about the menopause and Parkinson’s and GP advice in our magazine.
Kim, diagnosed in 2021 at the age of 41, shares her experience.
“We urgently need more research into the impact of hormones. I’ve experienced these challenges myself when I had to change my birth control brand.
“Just this subtle change had a huge effect on my symptoms, my Parkinson’s felt like it had advanced overnight and emotionally I was all over the place.
“Once I realised it was likely due to changing my birth control, I found that most healthcare professionals were pretty sceptical apart from my Parkinson’s nurse. Once I changed back to my regular medication things did go back to normal but it took several weeks.”
Read more about the experiences of younger women and Parkinson’s on our magazine pages.
Why is research failing women (and men)?
Over many centuries, research has been largely led by men and this has led to a focus on the male sex in scientific research. As a result, women’s voices, experiences and priorities have not been heard.
Women’s bodies have been seen as more difficult to study due to the hormonal cycle. Women at an age where they could have children have often been excluded from taking part in research studies, due to fears and safety concerns for unborn children. While in the lab, researchers have primarily studied male cells and animals for similar reasons – to avoid any effect from the hormonal cycle.
This means that we have ended up with a very skewed view of Parkinson’s which has largely ignored women’s biology and experiences. This has not only led to the disparities that women face today but means we are missing out on a large part of the story when it comes to Parkinson’s research.
There are important benefits for everyone when we take sex and gender into account in research.
Professor David Dexter, our Director of Research, says: “Understanding sex and gender differences in Parkinson’s could help unlock new insights. Women are less likely to get the condition than men - why is that? Studies suggest that some female hormones are protective but how does that work and does it support the wider usage of hormone replacement therapies? If we can understand this protective mechanism, perhaps we can use that knowledge to develop therapies for everyone.
“And when it comes to clinical trials, we need to make sure we include an equal balance of men and women to see how potential new therapies work for both. We need to analyse the results to see if there are any differences in how men or women respond to therapies. That will enable us to deliver treatments that work better for everyone.”
What we’re doing to improve research and support for women
We are committed to ensuring that the research, treatment and care meets the needs of women with the condition.
To accelerate positive change we are:
- working with experts to strengthen our funding processes to make sure that the research we fund properly addresses sex and gender considerations.
- working with women, other Parkinson’s organisations and partners to raise awareness of the importance of sex and gender in research with the international research community.
- working with women and healthcare professionals to look at what we can do to improve treatment and support for women living with Parkinson’s now.
We’re extremely grateful to all the women who have shared their personal stories and tirelessly campaigned for change. We are proud to be working with them and other patient organisations to make positive change happen for everyone with Parkinson’s.
Tracking the menstrual cycle and Parkinson's
My Moves Matter is an app created by someone with Parkinson’s. It aims to empower everyone who has Parkinson’s to live their best lives through understanding their individual needs and is the only app that tracks Parkinson’s symptom changes across the menstrual cycle. Read the review of the app on the Tech Guide to find out if it's right for you.