Women and Glanzmann thrombasthenia: GT360
By Kathryn Jenner
The platelet function disorder Glanzmann thrombasthenia is known to affect roughly equal numbers of men and women. However, findings from our Glanzmann’s 360 (GT360) study suggest that women are impacted to a greater degree.
In a previous blog, we gave an overview of what GT360 told us about living with Glanzmann’s. Of 117 participants, 66 were women or the parents of daughters with Glanzmann’s. Among the women with Glanzmann’s, 54 answered questions related to their menstrual cycle and 12 were interviewed in depth about their symptoms, care and day-to-day experiences.
“I had a period that went on for months”
Overall, bruising, nosebleeds and gum or mouth bleeds were the most common symptoms reported by GT360 participants – but women reported experiencing more bleeds across all categories. In addition, almost all women (92%) said they have heavy and/or prolonged periods.
In our Cinderella study, we learned that many women with a bleeding disorder accept heavy menstrual bleeding as ‘normal’. Heavy periods are normal to them, normal in their families, and they know little different due to periods being something of a taboo subject, even among friends. It isn’t a ‘problem’ until it gets really, really bad.
With a disorder like Glanzmann’s, however, the onset of menarche can be traumatic. One woman told us:
“I had my first menstrual cycle and bled out, so I was in hospital for a month, lots of blood transfusions, the combined pill, iron tablets, the lot.”
“I’ve been anaemic probably half my life”
This experience was common to the majority of women we spoke with, and many continued to lose weeks of school regularly due to heavy menstrual bleeds. Most were treated with hormonal therapy from a relatively young age to help manage this – though we also heard that, while this helped, their periods were still heavy.
With heavy and prolonged bleeding comes iron deficiency anaemia and fatigue, which also impacts day-to-day life. Health-related quality of life is known to be reduced in women who experience heavy menstrual bleeding, with or without a bleeding disorder, due to its impact on overall health and wellbeing. Our GT360 findings also suggest that frequent bleeding is linked to a high degree of psychological distress.
“They were told I’d never have a family”
Another important issue impacting women in GT360 centred on reproductive choices. Alongside the need to stop the hormonal therapy that many use to help control heavy periods, pregnancy and childbirth carry a high risk of bleeding for women with Glanzmann thrombasthenia.
Some women told us that coming off hormonal therapy so that they could try to conceive was of huge concern to their consultants. Several were advised against even thinking about having children, one before she had even started her periods, due to the risk of a life-threatening bleed.
For some, this had an impact on their relationships too. Despite meeting someone she fell in love with, one woman warned her partner (now her husband) that if he wanted children he would do better to “get out while the going’s good, because further down that road, the harder it becomes”.
Looking to the future
Five of the women we conducted in-depth interviews with had had children – all experienced post-partum bleeding despite having detailed care plans in place. Managing pregnancy for women with Glanzmann’s needs a very careful, coordinated multidisciplinary approach, and post-partum haemorrhage will always be a risk. Does this mean they should be discouraged from having children?
One woman who was interviewed summed up her view on this:
“I feel like if people knew a bit more about it [Glanzmann thrombasthenia], or if it was more known, they’d be more prepared to try and help.”
We hope that, through the Glanzmann’s 360 study, we will help increase understanding of the experiences of all people with Glanzmann thrombasthenia.
With thanks to all those affected by Glanzmann’s who shared their stories with us, and to the Glanzmann’s Research Foundation.
For more study results, see our open access GT360 papers and video:
- Khair K, Fletcher S, Boyton M, Holland M. Bleeding and quality of life in people with Glanzmann thrombasthenia – insights from the Glanzmann’s 360 study. Res Pract Thromb Haemost 2024; 8(7): 102586. doi: 10.1016/j.rpth.2024.102586.
- Khair K, Fletcher S, Jenner K, Holland M. One day at a time: Life with Glanzmann thrombasthenia – qualitative results from the GT360 study. Haemophilia 2024. doi: 10.1111/hae.15126. Epub ahead of print.
- Living with Glanzmann’s Thrombasthenia | GT360 Study. YouTube.
Get in touch to find out more about our studies: research@haemnet.com
About the author
Kathryn Jenner is Communications and Community Manager at Haemnet.
Image: Rodrigo Pereira on Unsplash