Family looking out for family
Rachel’s Story
Rachel’s day always starts with a cocktail of medication and a good day is when she’s able to get out of bed and do some ‘normal’ daily living activities.
At times, she is profoundly disabled. Days on end unable to move, sit up, stand, walk, shower or change clothes, hold a spoon to eat, hold her neck up, hold a conversation or hold a phone to text or talk or ask for help.
She struggles with symptoms daily. In addition to debilitating muscle weakness, her symptoms include severe bone, joint and muscle pain, muscle twitches, tremors and cramps, chest pain and palpitations, migraines, neuropathy, swollen glands, cardiopulmonary complications, dizziness, difficulty breathing, dysphagia (difficulty swallowing/eating/drinking), difficulty talking, arthritis/degeneration, brain fog, whole system inflammation, vascular complications, insomnia due to pain and medications and significant fatigue and exhaustion.
Rachel now relies on Australian blood donations for immunoglobulin therapy every few weeks in hospital for the rest of her life. Emergency hospital visits still happen as well.
Rachel regularly uses disability aides such as a wheelchair, walking sticks, shower chairs, neck braces etc. She pays out of pocket for help for household duties, management of children at home and daily living support. She feels lucky to have access to quality care.
Living with a rare chronic illness that is largely invisible means Rachel has experienced discrimination and ignorance not only from doctors but from her own community and people close to her. Always with a smile and a little makeup, you could be fooled to think she isn’t in pain, having trouble sipping her drink or having trouble holding her neck up if you’re not looking closely.
Missing out on opportunities and experiences, losing independence, becoming isolated and being forgotten has significant impacts on people with Myositis. Groups and communities such as Myositis Association Australia have been a core source of support for Rachel in her journey and has made her feel visible. She is yet to personally meet anyone else with the same diagnosis but the Myositis Association records two others to be in the Brisbane region.
She hopes to see in the future more awareness of the Myositis group of diseases especially addressing the issues around pain management as well as focus on supporting those diagnosed and their families through the grief process.
Thank you for hearing her story.
Now, in solidarity of those struggling with the rare group of diseases known as Myositis, her dear cousin Matt Catterson is helping to raise awareness After years of growing his long locks, he will also be making the cut… and making it a hair-razing fundraising opportunity! Event Details on the donations page
Why get behind this?
Many of you have heard recent campaigns for ALS, MND or MS. Rachel was diagnosed with the similarly devastating form of Myositis, Polymyositis in 2019, and unfortunately it is a condition many doctors haven’t even heard of, little researched and still poorly diagnosed. However, it is no less a serious and debilitating progressive disease, with high complications, cancer risk, morbidity rates and no cure.
Polymyositis is ‘the irreversible and permanent death of muscle fibres’ including skeletal, heart, lung and swallowing muscles.
People diagnosed with this condition can have their lives and families’ lives significantly impacted and we need to do more to support them. Shout out to the carers who we value and appreciate and already do so much. So, let’s raise awareness and funds for resources to support not only Rachel but all those mighty Myositis warriors! This community will majorly benefit from visibility of this campaign so please share share share.
Matt’s story
After growing my hair to the longest length that it has ever been, I decided I could do my part in supporting three great causes by raising awareness through having a fundraising event where I have my hair cut, with the proceeds and my hair to these great causes.
It all started with the notion after a few years of growing my hair that I would donate it. And from there I made up my mind that I would like to also help raise funds for some charities that have importance in my life.
Of them all, the Myositis group of conditions is considered to be rare diseases, affecting about 5 in 100,000 in Australia, where still a lot of people including doctors aren’t sure much about it in detail. Some years back I had found out that my cousin in Queensland, Rachel, had been diagnosed with it.
After going to Queensland to visit my extended family, I stayed with Rachel and her own family. She did her best to take me out and show me around. But it was on that trip that I realised the effects that Myositis had on her and her body. At times I wasn’t even aware because she did such a good job at masking the pain and the misery. The next day she was bedridden and I couldn’t understand but think like the flip of a switch, how different today was for her.
That is the main reason that I have chosen to work with The Myositis Association because the more we are exposed to certain things, the more they become known. And when they become known, they become more of a priority. And I believe this should be a priority.
Hopefully in the not-so-distant future we can see better treatments for what is a devastating disease. That way, the rare cases of people, like Rachel, can enjoy spending her time with her family rather than having to battle the treatments that get her through the day.
