We know that some topics can feel uncomfortable, emotional or even taboo. Therefore, creating space for you to ask the questions that often go unspoken, is really important.
It can be powerful to voice the things you have always wanted to ask but never quite felt able to. That’s why we have invited members of our Fabry community to submit their anonymous questions - big, complex and personal.
Questions we received, included:
Is it normal to feel resentful that Fabry was passed on to me?
How do I cope with the guilt of passing on a genetic condition?
Is Fabry impacting my fertility?
What if I don’t feel “sick enough” to ask for help?
My mental health is very low, where can I get help?
These conversations aren’t always easy but they matter. Starting them can be a powerful act of self-advocacy.
Soon we’ll be sharing a Big Questions Resource which will be a compilation of the issues you've raised with reflections, answers and insights to help guide a way forward.
Remember, you are not alone in wondering and there is strength in asking.
You can still submit your questions anonymously.
Alison from our Support and Advocacy Team is the only person who will see your questions. If you’d like her to call you back, just leave your name and she will be in touch as soon as possible.
