How would you feel if you were in your prime when were diagnosed with the very thing that defined a big piece of your childhood because your father suffered from it?
To make matters worse, imagine having to fight to get diagnosed in spite of both your father and grandmother having had this same illness. If that wasn’t bad enough, with your diagnosis in hand, you realize that most research and clinical trials focus on how this issue relates to age and therefore by definition, exclude you.
Meet Sofia Petersson, 42-year-old wife and mother who lives with early-onset Alzheimer’s and bravely shares parts of her life with us through her “Sofia’s Corner” blog posts.
It’s true, age is considered as the number one risk factor for Alzheimer’s. That’s what people often point to when they see statistics about two-thirds of Alzheimer’s patients worldwide being women.
The logic is that because women live longer than men, they are naturally more prone to mental health issues that are age-related. Nevertheless, women live as an average a couple of years longer than men; and a few years difference cannot be the only reason to justify such numbers.
It’s just not that simple.
In the UK alone, Alzheimer and other dementias is the leading cause of death for women.
Worldwide, as mentioned, two out of three Alzheimer’s patients are women.
Women are the majority of those suffering from mental health issues, not just Alzheimer’s. They are affected twice as often by depression, migraine, PTSD, multiple sclerosis, anxiety disorder, and some brain tumors.
And there’s more.
Did you know that in 2013, the Food and Drug Administration (FDA) in the US had to change the labels on Zolpidem, a sleep disorder medication, to halve the dosage for women who were suffering from much more severe side effects (sometimes leading to death)?
Or that prescribing Aspirin to women can reduce the risk of stroke, but prescribing the same drug to men will reduce their risk of cardiovascular disease?
Women’s brains are affected differently by diseases, their symptoms, and treatment.
Why? We’re not sure.
This is one of the challenges we face – the science around Alzheimer’s and other issues relating to brain health is constantly evolving, and it can be remarkably difficult for medical professionals that don’t specialize in these topics, not to mention patients and the broader public, to stay up to date with the evidence – let alone understand all its subtleties.
However, a part of the answer may lie in that there are differences between the brains of men and women. And yet, most basic and clinical science is done assuming men and women are comparable.
For myriad reasons, a majority of neuroscience experiments are still carried out with male mice. Similarly, women are often under-represented in clinical trials, especially early stage ones. When women are included in studies, the results are rarely analyzed comparing men and women.
It’s time to change how we’re doing research.
The Women’s Brain Project (WBP) is an organization that advocates for women’s brain and mental health, and among other things are pushing for differential research based on sex and gender, a first step towards precision and personalized medicine.
Women and men may need different preventative strategies, different biomarkers, and perhaps even different treatments.
Sofia is one of WBP’s ambassadors, alongside a singer, a slew of brilliant scientists, a comedian, medical doctors, and experts in novel technologies. Man or woman, patient, caregiver – regardless of the label you embrace, if you care about women’s brain health, make your voice heard!
Find us on social media (Twitter and YouTube) or let us know you’re interested in being part of this change. Use #womensbrainhealth and #womensbrainpro to connect with us and find out how you can make a difference, too. And, of course, stay tuned for more information about the Women’s Brain Project initiatives, including the next International Forum on Women’s Brain and Mental Health – open to scientists, medical doctors, patients, and caregivers, scheduled for Summer 2019.
Friday 21 September was World Alzheimer’s Day, and September is Alzheimer’s Month – but we are working towards better research and treatment every day, and we can’t do it without you.