032: Part 1: Trishna Bharadia, Award - Winning MS Patient Advocate
Uninvisible Pod with Lauren Freedman
Shownotes Transcript
Trishna Bharadia is an award-winning patient advocate, and was diagnosed with relapsing-remitting multiple sclerosis (MS) at the age of 28. As she tells Lauren in this episode, the diagnosis helped her find her true purpose: to actively campaign for patient engagement and to represent the possibilities of living – and thriving – with MS. She has since become a public speaker, writer, vlogger, blogger, consultant, advisor, and educator in the chronic illness sphere, volunteering with organizations such as the MS Society, Asian MS, ADD International, and the MS Trust (among others), as well as being recognized by the British Prime Minister with the Points of Light award, which recognizes outstanding volunteers who are making a change in their community and inspiring others. In 2015, Trishna was selected out of thousands of nominees to take part in The People’s Strictly – the UK version of Dancing With The Stars, which features individuals making an impact in their communities, with proceeds going to Comic Relief. Her persistence is made all the more extraordinary because her advocacy work is done in her spare time! She works full-time as a translator, and has done so since before her diagnosis. She campaigns with added vigor in the Asian community, as well as with young people. More on that part of her work in a future episode!
**Join us as Trishna shares… **
how she was first diagnosed – and that she was initially misdiagnosed, as are so many fellow spoonies
that a newly-qualified doctor provided her diagnosis; and that an MRI, spinal tap, and blood tests confirmed it – after she lost feeling down one side of her body
that waiting for a diagnosis was stressful, but that the diagnosis itself was a relief
that current treatments for MS don’t cure the disease; however, they slow degeneration and reduce the severity of symptoms
that she wasn’t initially offered direction and support for her diagnosis
that she was on her first treatment for 3 years before developing an immunity to it; and that she developed two long-term conditions in response to the next treatment – urticharia (chronic hives) and angioedema (deep tissue swelling)
that she sees a neurologist and an MS specialist for ongoing care
that she travels 80 miles round-trip to see her MS specialist – but she does this to see the best of the best
that she recognizes the importance of lifestyle and mindset in managing her condition
the importance of asking for help
that she now relies more on her parents than ever before – and she’s learned to embrace that shift positively. She’s learned to see this changing relationship as the gift of extra time with her family
that her younger sister has ulcerative colitis, and those symptoms started the same year Trishna’s MS symptoms began; and that her identical twin sister was diagnosed with MS 2 years after she was diagnosed
her day-to-day symptoms: fatigue and bladder issues
as an advocate, the current focus of her work is patient engagement – and her work has gone beyond just MS, and into all patient communities
that in UK airports, sunflower lanyards indicate that someone has an invisible disability, so they can seek assistance without judgment This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com)
