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NSW CHAMPION

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Sarah Joyce (she/her)

LIVED EXPERIENCE
Disability, Transplant & Chronic Illness

KEY INFORMATION

Place of Birth: Australia
Current location: Central Coast, New South Wales, Australia
Age: 37 years old
Language/s: English only
LGBTQIA+: N/A
NDIS Participant: No
Diagnoses: Meningococcal with Sepsis (2016), Kidney transplant (August, 2020), amputations of fingers and toes, spleen and gallbladder removed, toxic mega colon, small bowel obstructions, VRE, C-Diff, malabsorption, intestinal failure, gastroparesis, CMV, recurrent pancreatitis, Insulin dependent diabetic, liver derangement, atrophic pancreas, SVC narrowing, strangulated intestine due to large internal hernia, severe
osteoporosis
Healthcare Access: Primary Health Care, Allied Health, Mental Health, Secondary and Tertiary care

BIO

Sarah Joyce is a passionate advocate whose life took an unexpected turn at the young age of 30. Born and raised on the Central Coast of NSW, she had a promising career in healthcare, working as a nurse, manager, and educator in Aged Care for over 12 years.

In August 2016, Sarah's life changed forever when she began experiencing flu-like symptoms. Initially dismissing them, she soon found herself in a critical condition with high fevers, shivering, and vomiting. Rushed to the Emergency Department with her parents, she was given an antibiotic as a precaution, but her condition rapidly deteriorated, and she developed a purple rash.

Diagnosed with the deadly virus Meningococcal, Sarah's body shut down, and she was placed in an induced coma with less than a 5% chance of survival. Her family said their goodbyes multiple times, but miraculously, Sarah woke up nine days later. Her journey to recovery was far from easy, with over 65 operations to save her life, multiple organ failures leading to the removal of her spleen, gallbladder, and large bowel, amputation of fingers and toes as well as an ileostomy and kidney transplant.

Despite enduring physical and mental struggles, including body dysmorphia and the loss of her independence, career, and ability to have children, Sarah made the courageous decision to share her journey and find purpose and worth. She became a passionate advocate for body positivity, inclusivity, and representation in media and fashion for people with scars and medical devices.

Recognised as one of Australia's most remarkable nurses in 2009 for her innovation in nursing, Sarah's advocacy extended to promoting the importance of meningococcal vaccination. As a survivor who contracted the new deadly W strain of the disease at age 30, she highlighted the misconception that meningococcal is only a child's disease and urged people to be informed about the different strains and the necessity of updated vaccinations.

Despite facing an eternity of multiple chronic illnesses and disabilities due to rare diseases, including relying on home parenteral nutrition through a central line to her heart, Sarah remains resilient. She has embraced ambassador roles with Meningitis Centre Australia and CoMO (Confederation of Meningitis Organisations), raising awareness for meningitis and organ donation.

Sarah's impactful journey has been featured in numerous news interviews, both on-screen and in print, and she has spoken at various events, sharing her story to inspire medical professionals and others. Her advocacy efforts have even led to the recognition of World Meningitis Day in Australia, with health ministers acknowledging the day thanks to her dedicated advocacy work. Sarah received a personal letter from the Federal Minister for Health thanking her for her advocacy work and had her story shared in Parliament.

Through her strength and determination, Sarah has become a beacon of hope, spreading awareness and inspiring others to embrace their own journey, no matter the challenges they face. Her unwavering commitment to making a difference continues to touch the lives of countless people worldwide.

ACHIEVEMENTS

  • HESTA Nursing Awards – Recognised as one of Australia’s most remarkable nurses for a nomination recipient for ‘Innovation in Nursing’, 2009 for which Sarah developed a Medication training package & policy which was then used across aged care homes.

  • Successful in advocating to NSW health minister to recognise World Meningitis Day – they had never recognised this day prior.

  • 12 years of experience in health care. Aged Care nurse, educator and manager prior to falling ill in 2016.

  • Advocacy in meningococcal vaccines through public speaking and social media, receiving constant feedback from people advising that because of me sharing my lived experiences they have now had themselves/family vaccinated.

  • Featuring in multiple news articles, radio interviews
    and podcasts covering Meningococcal, Organ donation e.g.  A Current Affair, channel 9, news.com, Mamamia podcast, local radio stations and more 

  • Speaking at a medical provider attended by approx. 100 people.

  • Speaking at local events sharing my struggles with mentally coping whilst fighting for my life.

  • Studying Bachelor of Public Health currently.

  • Sharing the realities of rare diseases.

  • Global campaign with CoMO (Confederation of Meningitis Organisations)

  • Featured on buses and billboards in a meningitis campaign.

LINKS

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