This Fabry Awareness Month, we are featuring a range of articles from guest bloggers describing their relationship with Fabry disease. This week, we have Donna Parker, our Fabry Support and Advocacy Officer at the MPS Society.
Information contained in these articles has been collected and written by our guest blogger and does not necessarily reflect the opinions of the MPS Society or its Board of Trustees.
Living through a pandemic has been hard for everybody but imagine being given a life-changing diagnosis like Fabry whilst in isolation. This has unfortunately happened with several of our members over the last two years, and I have been very privileged to have been able to support some of those members during this time.
One such member was diagnosed with Fabry after many years of illness which greatly impacted their quality of life. For them, the diagnosis was almost a relief that they finally had a name for what was wrong. However, this didn't mean it wasn’t an easy diagnosis to accept as it created a lot more questions than answers.
Through the MPS Society, I have been able to maintain regular telephone communication and/or virtual online meetings and talk through some of their thoughts and fears for the future, particularly following appointments with various medical professionals.
A Fabry diagnosis isn't just about the person getting the diagnosis as there is a domino effect to other members of the family and a lot of those who are newly diagnosed carry a lot of guilt about passing the disease onto their family and the impact Fabry will have on, all of them.
I have been able to signpost members to other forms of help, that they may be entitled to, this includes helping them to apply for benefits, housing support and adaptations, school and educational talks, counselling referrals, and liaising with educational or healthcare providers.
Hopefully, now that the world is getting back to a new ‘normal’ we will be able to reintroduce face to face meetings and attend specialist clinic appointments with our members in person.
If you would like to know more about Fabry disease, please visit our dedicated Fabry page.
If you or someone you know has Fabry disease and would like to talk to someone, please contact our Support and Advocacy team on 0345 389 9901 or email firstname.lastname@example.org.