In recognition of World Myositis Day (September 21), we are highlighting the stories of some of our overseas members. We are grateful to Scott Griffiths for his eager willingness to share his myositis journey.
My name is Scott Griffiths. I am 56 years old, and I was diagnosed with inclusion body myositis (IBM) in 2017. For 20 years I worked in the development of organic and inorganic coatings for the steel industry. In the last eight years of employment, I ran the steel companies’ durability laboratory and outdoor exposure sites. This YouTube video was made one year before my diagnosis. It not only demonstrates part of my working life, but also serves as a much-needed reminder of my compassion for people.
- What is a fun fact about you, that has nothing to do with myositis?
I was born and raised in Hobart, Tasmania, the youngest of five children. My childhood consisted of canoeing, swimming, and fishing in the cool, clear waters of the most southern state of Australia.
- What is your most useful hint, hack, or tip for navigating daily life with myositis? Do you have a specific self-care practice or resource that you recommend to others?
As soon as I was diagnosed with IBM in 2017, I joined a local Tai Chi group. Tai Chi and the associated practice of qigong have helped me maintain my balance, calm my mind, and relax my tight, fatigued muscles.
- How long did it take you to receive an accurate diagnosis?
In hindsight, my first symptom was around two years before diagnosis. I was on a bush walk with a group of friends. The track was quite steep, and the walk should have taken about an hour. I was halfway through the walk when my leg muscles became shaky and fatigued. I had to abandon the walk and was led back down the track by the light of my phone in what was by now pitch-black darkness.
- What was your first myositis symptom?
I was one of the lucky ones. After I complained of not being able to grip gym equipment, my medical team put me through a raft of tests to rule out a stroke, nerve damage from bulging disks in my neck and carpel tunnel in my wrists. My neurologist sent me for a biopsy within two months of starting the investigation, which came back positive for IBM.
- How has myositis affected your life?
Eight years after diagnosis, I am still walking distance without too much trouble. My dominant hand can still close but is very weak. Due to fatigue, I have recently given up work to concentrate on my health and do some travel while I still can.
- How has your family/community supported you on your myositis journey?
My wife Pauline is very supportive. She is among the most compassionate people I know, and I love her very much. As for community support, I was accepted into the Australian Government’s National Disability Insurance scheme last year. This fabulous scheme covers much of the allied health professional support that I need.
- How does your care team of doctors, specialists, infusion providers, etc. help you manage your disease?
Coupled with my swallowing exercises, which my speech pathologist recommended, IVIG has successfully maintained my ability to swallow with little or no choking. My doctor and dietician were instrumental in prescribing a ketogenic carnivore diet, which I have been following for over 12 months. This low-inflammatory diet not only reduced my CK levels but also reduced my weight without reducing muscle. I feel good on the diet, and as a bonus, I don’t have to carry the extra pounds!
- What is one thing you wish every medical student knew about myositis, before they entered practice as a physician?
Medical training facilities should offer a specific course on autoimmune diseases so students can recognize the symptoms of each version of myositis. Having a well-informed practitioner would significantly shortcut the diagnosis process.
- How has TMA and/or your local support/advocacy organization been helpful to you and your family?
The TMA International Annual Patient Conference 2024 gave me some hope that there may be treatment for IBM one day. It is comforting to know that a large organization is working with medical researchers and experts to improve the outcomes of sufferers.
The Myositis Association of Australia has also been very helpful. We have local groups that regularly bring together fellow patients and carers.
- What words of encouragement do you want to share with others who have forms of myositis?
You are not alone. Reach out to your local TMA group and have a conversation. They will not be able to stop the progression of myositis, but you will find a compassionate person who knows what you are going through and will offer you advice that will go a long way to reduce the fear of the unknown.
Find out more about TMA Support and Affinity Groups.
Join any of TMA’s Support and Affinity Group meetings.
Support for global patient stories provided by Bristol-Myers Squibb.
