020 3389 7221 info@sarcoidosisuk.org
Today, we’d like to thank our amazing Charity Ambassadors 🌟 Meet Jacqui, our Patient Ambassador!
Not only is Jacqui one of our Charity Ambassadors, but she also sits on our Board of Trustees, helps to moderate our Facebook Support Groups, and is one of our Support Group Organisers! She truly is a Patient Ambassador, advocating for all sarcoidosis patients, in particular neurosarcoidosis patients and has helped with a number of our Patient Days. Thank you for all of the time you dedicate to helping to support us and sarcoidosis patients across the UK πŸ’™
“Volunteering at SarcoidosisUK since 2015 has been more than a full time job for me – it’s been a crusade I can join from my bed!
Having had a consultant who understood systemic sarcoid really helped me understand sarcoid from diagnosis at 18. I had symptoms of sarcoid and neurosarcoid since I was 2 years old, having been left undiagnosed, then misdiagnosed for years, even after diagnosis from an eye biopsy.
Sarcoid involvements: eyes, lungs, skin, joints, tendons, spinal cord and neurosarcoid.
It’s essential that we give support and share our experiences so that our members can develop their understanding of how sarcoid may affect them, giving them confidence to become their own advocates. Of course the success of this depends on having understanding doctors and confessing all our symptoms when they can seem unconnected. The charity’s GP module should help more doctors understand that sarcoid is an immune system dysfunction, affecting one or many different systems. I know my results are often within normal limits so don’t support my symptoms!
Representing the charity as Patient Ambassador has been very rewarding at a time when I’d be written off, too ill to work.”
Click the links below to read some of the papers she has co-authored with doctors as a patient.
Her parting piece of advice is that “[until a Rare Disease Network has been set up], we should be referred to any doctor if there’s not an expert (in our particular manifestation) in our own board area.” Thank you Jacqui!