Have you checked out the latest episode (#103) of Mogil’s Mobcast – A Scleroderma Chat lately?
This podcast was created in 2021 by Ann Mogilevsky who has lived with Scleroderma for over 20 years.
The goal of her podcast is to have a central place for people afflicted with Scleroderma and a place for their families and friends to be informed by specialists in either Scleroderma or autoimmune topics.
She covers a wide range of topics like nutrition, medications, vitamins, and lifestyles. She also showcases stories from others affected by Scleroderma and how they have dealt with the challenges the disease brings.
I had the privilege of chatting with Ann Mogilevsky on her podcast about my own journey with Scleroderma and how it has changed many aspects of my life. In promoting this episode she writes;
“Today, we have an inspiring story of resilience, purpose, and advocacy. Our guest is Perry Bray, he was diagnosed in 2018 with diffuse systemic sclerosis, Perry faced life-altering changes, including stepping away from his beloved football and ministry work.
But rather than let the diagnosis define him, Perry chose to redefine what it means to live with this rare disease. He became a powerful voice in the scleroderma community, joining the Renew Program and the Peer Mentor Program through the University of Michigan.
He also shares his experiences and insights through his personal blog, creating a space of hope and connection for others. Perry’s journey is one of courage, adaptation, and impact and today, we get to hear it in his own words.”
I was also asked to share a bio about myself to feature on the Mogil’s Mobcast – A Scleroderma Chat site, which I’ve included below:
I was initially diagnosed with Scleroderma in November 2018 and have experienced a bit of a rollercoaster ride ever since – trying to navigate life with an incurable autoimmune disease that progressed to Scleroderma with associated Interstitial Lung Disease (SSc-ILD) in a reasonably short period of time.
Working out how it is affecting my body, mind and spirit and through a number of various tests and specialist appointments, what symptoms and ultimately what treatments and adjustments I can make to maintain my physical and mental well-being going forward.
I am an administrator for the Help End Scleroderma † Facebook page, which is Christian page designed to serve Scleroderma patients, in various ways. Most importantly, “Raising Awareness” of Scleroderma, which is one of the “Greatest Gifts” you can give to those who have Scleroderma. I also help with the administration of the Scleroderma New Zealand Facebook page. Scleroderma New Zealand provide support, friendship, and an exchange of ideas & information about Scleroderma.
I am also an administrator for salvationarmy3 a Facebook group for Salvationists and Christian Friends and anyone interested in finding out more about the Christian Faith, The Salvation Army, their Faith, and all that is involved within it.
I’ve been involved with The Salvation Army for almost 30 years, serving initially as a lay worker and then as an Officer (Minister / Pastor) from December 2007. I have served in various Corps (Church) appointments in New Zealand and served as part of the International Emergency Services of The Salvation Army in Nepal after the devastating earthquake of 2015.
I was a founding trustee and former chairperson of the Breathing Space Southland Trust which aimed to help those affected by homelessness. I oversee Spiramentum Ministries who endeavour to help people create breathing space in their everyday, busy lives and ministries. And I’ve recently established a Charitable Trust with my youngest daughter, Child Nepal New Zealand (CNNZ) which aims to provide ongoing support, funding and resources for the children and schools within Nepal.
I trained as a Natural Character Development Coach, which helps guide people towards a more purposeful and enriched life – living their best life!
And I also trained as a peer mentor as part of the Peer Mentor Plus Program which was based on the successful University of Michigan Scleroderma Peer Mentor Program and further developed in association with the National Scleroderma Foundation (NSF).
Although semi-retired now due to my health I continue to keep busy doing a myriad of things including coaching and mentoring others and being on the committee (board) of Scleroderma NZ, and I am in the process of establishing the Peer Mentor Plus Programme in New Zealand. I share my health journey on my personal blog – The life and times of Perry… along with invaluable information about Scleroderma.
Blessings ’til next time 🙂
The life and times of Perry... 