Patient Autoinflammatory Advocacy Committee
Alex Bussey (they/them)
Alex is from Atlantic Canada.
I was diagnosed with type one diabetes at the age of 3, and had other autoimmune diseases growing up. I was always the "sick" child, I was always very tired, and my immune system was much weaker than those of my friends and families.
A few days after my 18th birthday, I was hospitalized (with - at the time - multiple undifferentiated illnesses) and I fought for my life for 4 months. After that, I was sent home. I was told nothing else could be done and it was likely I would not see my 19th birthday. The following March, after being seen by immunology, I was diagnosed with multiple systemic autoimmune, autoinflammatory, and pain-related conditions.
Since then, I have slowly learned to live in my new reality with lots of physical therapy, occupational therapy, medications, doctors appointments, procedures, surgeries, hard work and lots of trial and error. Some days are better than others, but I now have a much better understanding of who I am and what I am capable of.
Lauren Dickler (she/her)
Lauren is from Central, Ontario.
Lauren is an adult patient with undifferentiated autoinflammatory disorder. Her symptoms include fever, fatigue, pain and hives. Every doctor she visited insisted she had a virus or that the way she was feeling was all in her head. It took her years to find a doctor who validated that she was sick, and even longer to find one that could help her.
Thankfully, she finally connected with a doctor who diagnosed her and she started on meds. After being diagnosed with depression in 2005, Lauren has provided peer support to adults struggling with their mental health and hopes to use her peer support skills to assist autoinflammatory patients. Lauren has a passion for sports and mental health. Although she has spent the last few years focusing on her health, she hopes she will soon be well enough to finish her PhD in sport psychology.
Reine Hodroj (she/her)
Hello, I'm Reine Hodroj, a 23-year-old warrior who has faced the challenges of Behcets disease for the past 7 years. Despite the daily battles with symptoms ranging from painful mouth ulcers to relentless bone pain, I've emerged not just as a survivor but as a passionate advocate. Serving as a dedicated member of the Patient Autoinflammatory Advocacy Committee, I am on a mission to raise awareness and build a supportive community for those navigating the complexities of autoinflammatory diseases. My journey has taught me the importance of holistic well-being, prompting me to explore treatments, from medications to lifestyle adjustments, while also incorporating art therapy to nurture my mental health.
Reese Merlin (they/them)
Reese is from Central Ontario
Reese is a 25-year-old Adult Onset Stills Disease patient. They were diagnosed after having mysteriously developed daily fevers, rashes, joint pain, sore throats and swollen lymph nodes. After trialing multiple medications, their Still’s Disease is currently in remission with Anakinra. However, they continue to live with partial hearing loss and other chronic illnesses. Reese currently works as a nurse, and in their time off, they love to spend time with family, friends and their cats. They hope to continue to advocate for the autoinflammatory community, and help other youth navigate the transition of managing chronic illness as a young adult.
Katelynne Saunders (she/her)
Katelynne is from Southwestern Ontario.
I work in child care and have a strong passion for history and travel, particularly in Europe. I love movies and all things golden retriever. I was born with a rare Autoinflammatory Disease called Blau syndrome. In the past few years my condition has connected me with some pretty amazing people through organizations like the Canadian Autoinflammatory Network and the Cure Blau Syndrome Foundation.
Meeting others with conditions like mine has brought me an immense amount of joy to finally have connections and an understanding for each other. It took me almost 26 years to meet another person with a Blau diagnosis and I hope that this new generation does not have to wait that long and can connect with one another using social media and patient organizations like the Canadian Autoinflammatory Network, The Cure Blau Syndrome Foundation and the Autoinflammatory Alliance.
Luna Sever (she/her)
Luna is from British Columbia.
Hi, I'm Luna Sever, a 26-year-old UX/UI designer who is trying to turn life's challenges into sources of inspiration. Growing up with Familial Mediterranean Fever meant my childhood was a series of hospital visits. During those times, games were portals to new adventures, and sketching was my way of calming myself. And let's not forget eating french fries - I think this one doesn't need an explanation! Now, despite the diverse symptoms that still come with living with FMF, my constants for happiness remain the same: good food, a good game, and my cat. Hopefully, a dog pretty soon!
Following an attack, I sought a community to freely discuss my experiences and found the Canadian Autoinflammatory Network. I wanted to connect with people with similar experiences and offer support to those navigating these challenges. Please feel free to reach out to me for a chat; I love to meet new people.
Sylvie Tress (she/her)
Sylvie is from Central Ontario.
Sylvie is 28 and has had a systemic autoinflammatory disease since she was a very young child that took over two decades to diagnose.
“Because of this, I have neurological complications such as Autonomic Dysfunction, Small Fiber Neuropathy and subsequently Complex Regional Pain Syndrome - the most painful disease known. I love neuroscience, reading research publications, and advocating as it gives me purpose through my pain.”