Living with a rare condition is psychologically and emotionally demanding. The diagnosis of a rare disease emotionally impacts not just individuals, but families, relationships, finances, work-life and future choices. It frequently involves low mood, anxiety, emotional exhaustion, and may also at times lead to suicidal thoughts or intention.
With more than 90% of people feeling low, worried or anxious at some point and 70% having felt at breaking point because of their rare disease*, it's not surprising that there is a demand for mental health support. Rareminds provide highly specialised counselling for the rare disease community and teaming up with them has meant another way we can support our community. Here's what they told us.
Emma Johnson, MUKCP – Specialist Counsellor
"It has been a pleasure to join the team at Rareminds and start to work with MPS Society and those living with a rare disorder. As a therapist it is my role to not only provide a safe and confidential space but to listen to your lived experience of MPS and Fabry and to hear how this experience has shaped your life and your relationships. I am becoming more and more aware of how those with rare disorders, and their families, have to manage so many tasks and demands and that this can feel, at times, overwhelming. Meeting with a therapist can help provide that shoulder of support, of feeling listened to and understood around any struggles or distress you might be feeling."
Zubyda Azzam UKCP (Accred.) – Lead Counsellor
"I’m delighted to be working with MPS society as their Lead Counsellor. At Rareminds we know that living with MPS, Fabry and related conditions can impact all aspects of family and personal life. It’s a privilege to be working with the wonderful team at MPS Society to support the work they do."
Rebecca Hargreaves MBACP (Accred.) – Young Person's Counsellor
"Living with the impact of a rare condition can be particularly challenging as a young person. You are already dealing with so much else, and the last few years have been particularly tough globally for young people. The last thing you might want to be dealing with - or have to think about - is living with Fabry, MPS or a related condition. As the MPS Society Young Adult Counsellor, it’s my role to be that neutral, confidential place and person to talk things over with if you're struggling about any aspect of life with a rare condition. I’m aways happy to have an initial chat before you decide to go ahead with any sessions too."
*Rare Disease UK (2018). Living with a rare condition: the effect on mental health. Available: https://geneticalliance.org.uk/wp-content/uploads/2024/02/living-with-a-rare-condition-the-effect-on-mental-health-pdf.pdf (Accessed: 1 May 2024).
We need to fundraise £30,000 every year to maintain the Rareminds counselling service. This MPS Awareness Week you can help by making a donation through the Big Give website between Monday 13 May and Sunday 19 May. All donations will will be doubled for FREE while matched funds last.
