Hannah's story - The Big Give Christmas Challenge 2021

I’m Hannah, one of the Support and Advocacy Officers at the MPS Society. Before joining the MPS Society, I supported those in in-patient mental health settings and learning disabilities as an Independent Mental Health Advocate. I also advocated for young people’s mental health at universities.

I have been with the MPS Society for a few months now, supporting families affected by MPS II Hunter and MPS III Sanfilippo disease. Whilst I haven’t been able to meet any of the families in person due to the pandemic, it’s been lovely to meet some faces over Zoom and get to know each other.


Over the past year, we have seen the true impact of how the COVID-19 pandemic has affected the mental health and wellbeing of our members and their families. Many of our families were shielding and some still are. There are many members that had difficulties accessing treatments, which had a huge impact on both their physical and mental health. We know that physical and mental health is interconnected and according to the Mental Health Foundation, one in three people with long term physical health conditions also have a mental health condition, often anxiety or depression.


It’s been difficult for them to not be able to meet other families going through similar situations during this time and have access to services that would otherwise be readily accessible. Both of these factors, accompanied by the loneliness that comes with living with a rare condition, has had a detrimental impact on their mental health.


Our team continues to provide reassurance and emotional support to our families, and we have been at the forefront of seeing the impact this pandemic has had on their mental wellbeing. We have recently launched our counselling service with Rareminds and have been overwhelmed to see how many people we have referred in a short period. The counselling service has helped our families talk through difficulties that arise living with an MPS condition. However, it shows the reality of the huge need for services and support just like this.


We are trying to raise £15,000 for mental health support services and we need your help! Donations for our Big Give Christmas Challenge open from 12pm on Tuesday 30th November to 12pm on Tuesday 7th December 12pm. Please click here to donate between these dates.