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Tiffani Deguara (she/her)
Disability, Chronic Illness & Mental Health
Place of Birth: Melbourne, Victoria, Australia
Current location: Melbourne, Victoria, Australia
Age: 27 years old
Language/s: English only
NDIS Participant: No
Diagnoses: Neurological Lyme Disease, Chronic Fatigue Syndrome, Fibromyalgia, Anxiety, Depression, PTSD, chronic gut issues
Healthcare Access: Primary Health Care, Allied Health, Secondary care, Tertiary Care, Mental Health, Community services.
Tiffani Deguara is a chronic illness, disability and mental health advocate, entrepreneur and founder of 'Consider Me Box', based in Melbourne. When Tiffani became unwell in her early twenties, she was unaware that her diagnosis would bring with it challenges to treatment access and recognition from the Australian medical profession. After a nasty sinus infection while travelling in Europe in 2016, Tiffani's health declined over the next 2 years. She sought various medical opinions and testing from dozens of practitioners, so desperate for any answers or root causes to my deteriorating health condition. I was 21-23 at this stage, and these should have been the prime years of my life.
I was labelled as depressed by doctors, unwillingly took multiple types of medication to attempt to mask my chronic body pain, brain fog and insomnia. I was told I was experiencing burn out and I was put in the too hard basket almost immediately.
I kept digging, my determination was tenacious and I became my own health advocate. I knew I couldn’t keep going in the trajectory I was on. Upon my research, I discovered that Lyme Disease could be the culprit. I had not only been unwell after my trip to Europe - but also had experienced various health issues since I was a child, and this was never having left Australia. Constantly bitten by mosquitos throughout my life, and contracting bed bugs in Europe, I knew this could be a real possibility.
Quickly I discovered the controversy of Lyme existing in Australia - and very quickly was made aware of how difficult it will be to receive treatment in this country if it were to be my diagnosis. I nevertheless sprung into action, requested my blood be sent to America for the most accurate testing possible - and there I received my answers. Treatment or solutions on the other hand - would be the real battle.
Opportunities for treatment are extremely limited in Australia. Due to the lack of awareness and outdated research, doctors aren't being educated about the severity of the illness and situation of Lyme existing in Australia. Patients are being ignored, gaslit, and left to fend for themselves.
Personally, since being diagnosed 5 years ago, I have had to travel interstate and travel overseas twice now to Cyprus and Switzerland in a bid to seek basic treatment at a huge financial burden. Unfortunately, the follow-up treatment I received could not be substantial enough for me to continue back in Australia, and any improvements I gained quickly dissipated.
Due to the difficulties I have faced, this has become my main driving factor in wanting to raise as much awareness as possible about this debilitating disease. Unfortunately, we have a long way to go in Australia, but I am hopeful that we will get there someday, and thousands of lives will be changed for the better.
Bachelor of International Business - RMIT
Worked in Product Development (fashion & accessories) prior to acquiring
my chronic illnesses.
In the process of overcoming traumatic Lyme Disease treatment that I have received overseas over the past 2 years. I’m very passionate about raising awareness that we need better access
to Lyme Disease treatment on our own home soil in Australia.
I run my own online business called Consider Me Box. I sell healthy gift boxes that I’ve carefully curated for the health conscious. We specifically cater to people with special dietary requirements i.e vegan, gluten free, refined-sugar free, low-tox. I created Consider Me Box because I believe everyone should be considered when it comes to gifting - no one should be left out because of dietary or lifestyle requirements. A key driver of the
business is to also raise awareness for chronic invisible illness - a large portion of this awareness is raised through our Instagram page. For every Consider Me Box sold, a portion of profit is donated to the Lyme Disease Association of Australia.
Multiple misdiagnoses led me to advocate for my health and find the correct channels to finally get diagnosed with Lyme Disease in 2018. I had to find a very specific Lyme literate doctor and get my blood sent to a lab in America. I was 22 at the time and it flipped my world upside down, but finally gave me answers.
Mental health issues due to my chronic illness and not being believed - have been not taken seriously multiple times throughout the years because doctors had believed it was “all in my head”
The nuances of being in your 20’s and diagnosed with chronic illness.
Experienced how difficult it is to be taken seriously by medical
professionals when you are in your 20’s.
Consider Me Box - Tiffani's business
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