“When we joined the board of the Fabry Support and Information Group – Netherlands (FSIGN) patient organization ten years ago, we quickly discovered what apparently many women in the Fabry community already know,” said Erica Schenk, Director and Secretary of FSIGN. “Men often do not want to express their feelings when it comes to coping with their disease. But women want to share emotions like joy and sorrow. That’s why I organized the first National Fabry Women’s Day in the Netherlands in 2005, now an annual event. We don’t invite speakers or give presentations. Instead, we create peer groups where women can share their feelings and get support from one another. So we eat and drink, laugh and cry with each other. No more, no less.”
We need to create awareness and stimulate further research into the effects and treatment of women with Fabry by providing more insights to researchers and physicians. We are convinced that the FIFI project is a very valuable addition,— Erica Schenk, FSIGN
At the time when these peer groups were started, Erica says, it was believed that women were only carriers of the disease but that they did not suffer from symptoms. So they were surprised when the peer group discussions started focusing more and more on the physical problems participants were experiencing, leading them to believe that their symptoms were likely a result of their disease. So Erica and fellow FSIGN board member Annelies Sweeb decided to create a survey of women affected by Fabry disease to better understand the impact of disease on women. They worked with the metabolic centre of the Academic Medical Centre of Amsterdam (AMC) to develop the survey, which was largely based on their own personal experience and the experience of peer group attendees.
The survey questionnaire had 66 questions. A total of 77% of Fabry-affected women in the Netherlands, along with a control group, completed the questionnaire. The conclusion of the survey was that the perceived health status was significantly lower in Fabry-affected women as compared to unaffected, healthy women.
Erica added, “During the Fabry Expert Lounge in 2012 in Munich a presenter stated that 60% of all men with Fabry suffer from depression. But the presenter didn’t mention anything about women. No one talks about the women! Well, we can tell you that our questionnaire shows that 55% of women in the Netherlands with Fabry disease also suffer from depression.”
The results of the FSIGN survey were published in The Journal of Inherited Metabolic Diseases. “We feel this is a great achievement because, to our knowledge, this is the first article resulting from a patient lead initiative where patients are proactively involved in the design and implementation of the study and are recognised as co-authors of an article.”
After the success of their survey, Erica and Annelies decided to organize “an International Fabry Women’s Day” and to expand their survey internationally. In order to do that, they needed additional funding and decided to apply to Genzyme’s Patient Advocacy Leadership Awards program. They called their project FIFI (Fabry International Female Initiative).
They were thrilled in 2011 when the Fabry Support and Information Group Netherlands was selected to receive one of the first PAL Awards. The award encouraged them to approach other potential funders and Fabry stakeholders, such as pharmaceutical companies and umbrella organizations, for support and funding. “We hope this project will be supported by all involved.”
At the moment we are in the process of translating the Fabry Women’s Questionnaire, which has been adapted to include new insights and experiences that have been gained along the way. We kindly ask – and highly encourage -- every Fabry patient organisation around the world to inform their female members about the survey so they can participate. We need to create awareness and stimulate further research into the effects and treatment of women with Fabry by providing more insights to researchers and physicians. We are convinced that project FIFI is a very valuable addition,” Erica said.
Early this year FSIGN announced the first International Fabry Women’s Day, and from now on, it will be International Fabry Women’s day every first Saturday in April. For more information about the FIFI project and to access the survey, please visit: http://www.fabry.nl.
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