Hi, I’m Lilia and I am ready tohelp others who are newly diagnosed and have young children.
Lilia Burton wants to let parents who are newly diagnosed with Relapsing-Remitting Multiple Sclerosis (RRMS) know that it does not mean they won’t be wonderful parents.
“When I was diagnosed with MS in 2017 at the age of 33, I was initially relieved as it seemed less scary than the other possibilities that might explain my symptoms,” Lilia said.
“It also validated what I was going through was real and I could seek treatment.”
It was only later that Lilia felt angry and worried about how she was going to look after her children, then a two-year-old daughter and nine-month-old boy/girl twins. Her husband worked FIFO and she was taking a break from her career as an environmental scientist.
“I did not cope well with my diagnosis initially – it took a very long time for me to accept I had MS and I took my time reaching out to MSWA.”
Lilia had suffered with severe vertigo three years previously. She now knows this was likely to be her first attack, although doctors were dismissive at the time. In May 2017, a numb little finger took her back to the GP, but both Lilia and the doctor believed that her busy life looking after three children under three was the most likely cause. An MRI was scheduled for three weeks later to rule out anything more sinister.
However, just days later, the numbness had spread to her arm and chest and she could no longer use her hand so this time she went straight to the emergency department. Her scheduled MRI was brought forward and a neurologist diagnosed her with RRMS.
“I had a preconceived idea of what MS was, but my neurologist assured me that a MS diagnosis wasn’t as scary as it was 10 years ago,” Lilia said.
“He told me that there were a lot of treatments available now to slow disease progression and immediately started me on Tysabri infusions. Since then, annual MRIs have shown that I have no new lesions.”
Lilia has since regained most of the use of her left arm, but it still has slight weakness and she regularly gets dizzy.
The ongoing symptom with the greatest impact, like so many other sufferers, is MS fatigue. Simple everyday tasks can leave Lilia exhausted, but she is very fortunate to have a great family support network to assist when needed.
Lilia has also applied for an NDIS plan with assistance from MSWA who are currently helping her navigate the paperwork. She is hoping to access MSWA In-Home Care services to help ease some of the burden from household chores.
“The application process can be quite complex so it’s great to have someone guide you through it.”
Lilia also has expert advice on hand in the form of an MSWA nurse who works alongside her neurologist.
“Petrina is brilliant. It’s not always easy to get in touch with your specialists but I have her mobile number so I can contact her if I have any concerns about potential new symptoms and she is able to pass on my concerns or put me at ease. She is also able to assist with changing MRI or specialist appointments.”
Lilia has also attended MSWA support sessions at the Beechboro Services Centre for those newly diagnosed with MS. It was at one of these sessions that Lilia met a mother in her fifties who had lived with MS for nearly 20 years.
“Her story really resonated with me, as she was diagnosed in her mid-thirties, not long after having a baby. But here she was living a seemingly normal life with a now healthy happy 18-year-old son… it gave me so much hope!”
“I’m very glad to be an MSWA Member and wish that I had accessed it sooner.”
Lilia is ready to help others who are going through what she has experienced as a newly diagnosed mum with young children.
“I hope that by sharing my story I can help other young parents, like the mother at the group session helped me, to see that an MS diagnosis does not mean that you can’t still be the mother or father you always hoped to be.
But you also shouldn’t be afraid to ask for help from your support network and/or from MSWA. Being a parent is hard enough without MS and it really does take a village to raise a child.”