Glenn's story - Coming to terms with my rare condition

In the latest Rareminds podcast Glenn shares his experiences of how growing up with X-linked adrenal leukodystrophy, taking part in clinical trials as a child and losing his brother to the same condition impacted on his mental health.

For more information about X-linked adrenal leukodystrophy visit Metabolic Support UK: https://metabolicsupportuk.org/.

For more information about looking after yourself when living with a rare condition visit our Wellbeing Hub: www.rareminds.org/wellbeing-hub.

Rareminds⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ is a mental health charity providing counselling and mental wellbeing services for people impacted by rare conditions. And we believe that rare minds matter.

We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.

A big thank you to Amicus, Parexel and Takeda for all their encouragement and being our 2025 series 2 sponsors.

Follow us on ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ and ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Linkedin⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ for more suggestions to live as well as possible with your rare condition - @raremindsuk
Music credit: Alex Grohl

Crisis support
If you are feeling overwhelmed do talk to someone straight away.
There are a range of organisations and helplines to support you:
NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).

Emergency Services on 999 or go straight to your nearest A & E.

You can also call a crisis line:
⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SHOUT⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.
SHOUT: Text SHOUT to 85258
⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠The Samaritans⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to [email protected] but be aware it may take several days to get a response by email.
Samaritans: Phone 116 123
⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Calm⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.
(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.
If you are waiting for help, feeling ‘out of control ‘ or overwhelmed, ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠MIND⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ also has some strategies to help you cope and feel calmer ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠here⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠.