My Disease Does Not Define Me: Stigma and Perceptions of Chronic Illness

Dave Craig is a two-time cancer survivor, oncology researcher and patient experience champion. After 10 years of struggling to see his own cancer journey in the patient experience research he led for the pharmaceutical industry, he left to use his survivor heart and researcher brain to help other patients. In 2016, he co-founded Gryt (“grit”) Health, a digital oncology solutions company that empowers people to be in charge of their own health through connection, education and advocacy. At Gryt Health, he and his team of fellow survivors and caregivers, use their expertise and personal experiences to improve medicine development and access, while creating platforms to learn from and support the lived experiences of facing a diagnosis.

I am Ingvar Agust Ingvarsson, residing in Kopavogur, Iceland. Married and have one daughter and two grandkids.

I was diagnosed with psoriasis 29 years ago when I was 24 years old. My journey as a patient has been arduous, marked by persistent efforts to attain better health. Through numerous hospitalizations and diverse treatment approaches, I've sought improvement. While I recognize that my condition is incurable, I presently undergo a biological treatment that effectively manages my symptoms, rendering me nearly 99% symptom-free. Although I hold hope for a cure in my lifetime, it's noteworthy that psoriatic disease has afflicted humanity from ancient times and Hippocrates described skin conditions that could possible be interpreted as psoriasis in his writing around 400 BC.

Since 2010, I've been an engaged patient advocacy volunteer. My involvement commenced when I joined the Board of the Icelandic Psoriasis and Eczema Association as a Member. I assumed the role of Board Chairman from 2014 to 2018. As Chairman of the Icelandic organization, I actively contributed to NordPso—a collaborative endeavor encompassing all Nordic nations, dedicated to advancing the interests of the psoriatic disease patient community. Since 2016, I've been a part of the IFPA Board, initially as a Member-at-Large and, for the past 4 years, serving as Vice President. This commitment to the global cause has enriched me significantly, witnessing the collective impact we can achieve propels us towards even greater accomplishments.

At the age of 23, I was confronted with the life-altering diagnosis of multiple sclerosis (MS), a journey marked by distinct stages of emotional upheaval. Initially, confusion enveloped me as I grappled with the unfamiliarity of the condition, seeking answers and understanding. This confusion evolved into a period of depression, as the weight of the diagnosis settled in, and I faced the daunting challenges ahead.

However, amidst the darkness, I found a resilient spirit within me that pushed me towards acceptance. Through relentless self-education and unwavering support from loved ones, I embraced my reality and harnessed it as a catalyst for personal growth and transformation. I made a commitment to myself that MS would be something I lived with, MS would NOT define me!

This journey proved to be an invaluable foundation as I later navigated motherhood to triplets, two with special needs. My experiences with MS instilled in me a unique empathy and resilience, enabling me to approach the challenges of parenting with an unwavering determination and a deep well of patience. Through my own journey of confusion, depression, and ultimate acceptance, I've harnessed an inner strength that continues to guide me as a dedicated advocate for both my children and the wider community, demonstrating that even in the face of adversity, hope and perseverance can pave the way for a life rich with purpose and compassion.

A Psoriasis Patient-Leader who uses the pageant platform to raise awareness on the Psoriatic Disease across the Philippines and the world.

I finished two degrees, Bachelor of Science in Accountancy in 2020 and Bachelor of Science in Accounting Technology in 2019 as Magna Cum Laude. Straight out of university, I opened my own cafe now operating for 3 years and has helped several women in my community by providing them means of livelihood.

In the realm of pageantry, I hold the titles Miss Cabadbaran 2020, Aliwan Fiesta Digital Queen 2020 and Miss Uiverse Philippines Top 10 Finalist. All through out my pageant journeys I made sure to continuously raise awareness on the Psoriatic Disease all while supporting 3 main NGOs which are the following;

• Protect Feed Save Inc. - An NGO that aims to help street children and children in the streets through feeding and story telling activities.
• I became President in 2020-2022 where we focused on encouraging the youth in our community to volunteer and help thousands of families through initiatives and by distributing relief packages all through out the Region in the time of the pandemic and natural disasters. Our initiatives were also recognized in the President’s report to the People in 2021
• GESU Children’s Inc. - An NGO that helps teen survivors of domestic violence.
• I worked as a volunteer and have connected several organizations to GESU which up to present help with the continuity of their programs.
• PsorPhil - An NGO that aims to improve the lives of the people living with the psoriatic disease.
• I’ve been a member since 2019 and raised awareness through my personal social media account. In 2023 I was appointed as PsorPhil youth president and took an active role in lobbying for the Psoriasis Bill in the House of Representatives and at present I aim to once again solidify the Youth engagement in PsorPhil by continuing existing programs like the school caravans. My life story has inspired many which paved several opportunities for me to speak in front of different sectors in the Philippines and the world. Recently I was one of the Panel Speakers in the IFPA Forum in Asia 2023 held at Singapore.

In Miss Universe Philippines 2023 I finished top 10 and received the following awards: 2- Year Scholarship at Kingston International College, Tingog ng Filipina - Mindanao, Miss Photogenic, Glam Challenge Winner, Top 5 Runway Challenge, Top 5 Swimsuit Challenge.

I continue to pursue my dreams along with the challenges in living with the Psoriatic Disease. I believe in the power of storytelling that’s why I continue to share mine.