April is Fabry Awareness Month!
This year, we have some interesting insights from Fabry Matters to share with you. Keep an eye on our social channels and remember to share these with your contacts to spread awareness about Fabry disease.
​How to get involved
Get social and help us raise awareness of life with Fabry disease by sharing our posts and stories on your social channels. Follow us on Facebook and Instagram and use #FabryAwarenessMonth and #fabrymatters when you repost. Let's get everyone talking about Fabry disease!
You can also help us support those living with Fabry disease by making a donation. Our members face so many challenges because of their symptoms and we are here to make life as easy as possible so they can live life to their full potential.​
Together we will open up and start a conversation about Fabry disease.
What we want people to know about Fabry
We kicked off Fabry Awareness Week in our community groups with the question:Â
What’s one thing you wish more people understood about living with Fabry?
The responses really shone a light on how isolated and forgotten our Fabry community can sometimes be made to feel. Many described the daily toll of fatigue, pain and emotional strain, challenges that are often hidden behind smiles and misunderstood, even by close friends or medical professionals.
We heard how Fabry ripples across families. Dealing with your own diagnosis alongside the diagnosis of other family members can often cause additional strain. You also shared more about the importance of flexible education and employment.
Members of our community spoke about the value of describing Fabry as an invisible disability, a term that is often better recognised and understood than rare disease.
Invisible disability.
Keep talking to us – your words make a huge difference and these conversations help to shape our services we provide for our Fabry community and how we talk about Fabry to the public and professionals.
Early diagnosis, screening and the power of knowledge
Currently, the average time to diagnosis for someone with Fabry is still around ten to fifteen years after symptom onset and we know that many on our community waited much longer than this.
RDRP shared a poster about diagnosis of Fabry prompting conversations about the current landscape of screening and testing in the UK.
While some countries include Fabry in their newborn screening panels, the UK does not. The ethics of screening for conditions as variable as Fabry are complex. While early knowledge can empower and enable proactive treatment, some worry about the impact and implications for those who may remain symptom-free for many years after a newborn diagnosis.
It’s no surprise that within the Fabry community, there are strong feelings on both sides of the debate.
Our community explored the challenges of interpreting genetic variants and the emotional weight that comes with knowing your diagnosis from birth.
Healthcare professional education remains a top priority at the MPS Society. We have produced this excellent Fabry education tool. Please tell you GP and other healthcare professionals you meet about it.
One parent shared how a single conversation changed everything:
He [the ophthalmologist] listened, connected the dots, and ultimately led to my diagnosis. It made all the difference.
Does your doctor know about Fabry?
We’ve launched a new Fabry education tool for professionals and we need you to share it with the healthcare professionals you have contact with. Download our handy postcard about this FREE tool and send it to your GP, clinician or specialist so they can learn more about Fabry and hopefully share with their colleagues. Or ask us for copies you can post.
Knowledge is power
As Fabry Awareness Month continues, the MPS Society will be representing our community at the Fabry International Network meeting. We will be making global connections and bringing back the latest insights and practical knowledge on Fabry disease for our UK members.
Together, we're pushing for better awareness, earlier diagnosis and tackling misconceptions.
As Fabry Awareness Month comes to a close, we want to remind you that:
We’ve come a long way-but we’re not done yet.
Read your stories
Story
Living with Fabry
This Fabry Awareness Month, we are featuring a range of articles from guest bloggers describing their relationship with Fabry disease.
29/03/2023
Blog
Living with Fabry: Loretta's story - Fabry Awareness Month
This Fabry Awareness Month, we are featuring a range of articles from guest bloggers describing their relationship with Fabry disease....
28/04/2022
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Living with Fabry: Naomi's story - Fabry Awareness Month
This Fabry Awareness Month, we are featuring a range of articles from guest bloggers describing their relationship with Fabry disease....
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Find more resources
My Fabry treatment: a guide to empower and inform Fabry patients on their treatment journey
This guide is for patients with Fabry disease. It explains the structure of care you may receive at your specialist centre.
Living with Fabry disease - David Moreno-Martinez
Dr Moreno-Martinez talks about living with Fabry disease and what it means to navigate a rare genetic condition at Fabry Matters Conference 2024.
Understanding Fabry disease
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...