In order to stay up to date on the best recipes, latest treatments, drug discovery, clinical studies and how to manage Ankylosing Spondylitis everyday AnkylosingSpondylitis.net brings you frequent articles, blogs, points of view and advice from leading patient advocates and professional medical experts.
René Agterhof has been an Ankylosing Spondylitis patient for almost thirty years. At age nine he had the first symptom. Not long after that, he started to experience heavy inflammation pains in his lower back and hip region. A long period of hospital visits followed and after multiple x-rays, MRIs, and CT scans he received the diagnosis of Ankylosing Spondylitis. Read more.
Lisa Marie Basile
Lisa Marie Basile was officially diagnosed with Ankylosing Spondyltiis in 2017 after living with nearly a decade's worth of symptoms. She has attended the NASS meetups in NYC, and is an advocate for many people with AS through her writing and social media presence @lisamariebasile.Read more.
Lana was diagnosed with Ankylosing Spondylitis in 2015 at the age of 23, shortly after her 4 years as a college student-athlete. After many difficult years of pain, doctor visits, testing, and treatments, she is now living a happy and healthy life. Read more.
Diana Castaldini is a writer and passionate patient advocate living with ankylosing spondylitis and several other medical conditions. No stranger to chronic health issues, she was diagnosed with AS at the age of 26 on the heels of a long hospital stay and several surgeries for two serious brain conditions. Read more.
Ali Cornish is a freelance writer and founder of Everthrive who lives in northern Colorado with her husband and two young sons. She was diagnosed with AS in 2016 but has been living with its symptoms since 2011. Read more.
Hi There my name is Nadine but everyone calls me Nay I’m 38 years old and was born and raised in Bronx NY, I'm a single stay-at-home mom on disability raising 3 amazing children 2 boys and a girl 15, 9, and 2. I was diagnosed with AS also known as Ankylosing spondylitis in January of 2018. Read more.
Steff Di Pardo
Steff is a 24-year-old living in Toronto, Ontario. In February of 2017, she started showing symptoms of AS in her lower back and hips, shooting down her right leg. She began going to numerous doctor’s appointments and physiotherapy twice a week. No one could determine what was going on, and eventually, she had to leave work due to the amount of pain she was in. Read more.
It's been a long journey to diagnosis. I received my diagnosis in February 2020, after being dismissed from several doctors that it was just depression and anxiety. I was finally believed that there was more than just my depression and anxiety going on with my body. Read more.
Jed Finley was diagnosed with Ankylosing Spondylitis at the age of 12 during a time when children of that age were not prescribed medications and the amazing treatments we have today hadn't been invented yet. Because of this, he mostly forgot about his diagnosis and remained active until his early 20s when the disease became too much and he needed to stop the sports and activities he loved. Read more.
Jessica is a writer, artist, wife, academic, dog-mom, and outdoor enthusiast who is learning more each and every day about life with a chronic illness. After nearly a decade spent in graduate school studying writing and literature, she is now a university administrator who spends her free time hiking and writing about her illness. Read more.
Dawn Gibson has lived with Ankylosing Spondylitis since 2001. She entered health advocacy by joining Twitter in 2011. In the intervening years she immersed herself in Spoonie Twitter, founding Spoonie Chat in 2013 and growing it into a thriving community of mutual support, friendship, and solidarity for patients. Read more.
Gabriela Guadalupe is a medical school student from the island of Puerto Rico. She was diagnosed with Ankylosing Spondylitis in March 2020 at the age of 25. About a year before her diagnosis, symptoms started with occasional limping and sacroiliac pain that became more persistent throughout time. Read more.
Jes is a mom of 2, married to her high school sweetheart, and calls CFB Petawawa Ontario home. She is a grief and chronic illness advocate as well as the creator of the #injectwithme campaign. (She can be found at @house_of_spoons on Instagram ) Read more.
James Hollens is a 26-year-old from Croydon, South London. Shortly after graduating from university in 2016, James was diagnosed with Rheumatoid Arthritis and three years later was lucky enough to add an Ankylosing Spondylitis diagnosis into the mix. Read more.
Erin currently lives in Boston, Massachusetts with her husband and their two rescue dogs, and was diagnosed with Ankylosing Spondylitis at the age of 25. She attended Boston University, where she was a member of the Women's Rugby Team. It was during this time that she first started experiencing severe pains in her hips, and no one could seem to figure out what was causing them. Read more.
When I was nine I began experiencing excruciating pain in all of my joints. My mom suspected it was Ankylosing Spondylitis as it ran in our family, but my family doctor refused to send me for blood work insisting that it was nothing more than growing pains. Read more.
Ali is a 23 year old student studying Social Care Work. She lives by the sea in the south of Ireland. She received her diagnosis in June of 2020. This is when things changed for Ali. "I was finally heard. Finally, someone believed me." She was incredibly lucky to get her diagnosis within a year as this is not always the case. Read more.
Auldyn is the caregiver of her husband, Keegan, who was diagnosed with Ankylosing Spondylitis in 2014. Auldyn’s always known Keegan with pain, even when they started dating over 10 years ago. Over these years they’ve navigated doctors, surgeries, and treatments to define a new normal for their family. Read more.
Ashley Nemeth is a blind mother of 3 ages 14, 15, & 18, she was diagnosed with Ankylosing Spondylitis when she lost her vision suddenly at the age of 24. Ashley works in the disability field and outside of work is a vocal, passionate advocate. Read more.
Fiona lives in London with her partner Kev, and is still waiting to get a dog. She grew up in Sydney, and moved to London in 2010, and a couple of years in, abandoned journalism in favour of pursuing a career in acting and musical theatre. Read more.
Cassia Pelton was 18 years old when she first started experiencing sharp pains in her sacroiliac joints. She went from being a healthy varsity figure skater and university student, to being unable to walk or even sit up in bed. After visiting sports doctors, chiropractors, physiotherapists, and the ER, she was diagnosed with Ankylosing Spondylitis at the age of 19. Read more.
Lawrence "Rick" Phillips
Lawrence 'rick' has spent over 30 years in local government and local school district administration in Indiana. He has at various times, been a Director of Finance, City Controller, Personnel Director, Development Director and all-around computer guy (that position lasted one year). He grew up and lives in central Indiana with his wife Sheryl of more than 40 years. They have two sons and three grandchildren. Rick was diagnosed with type 1 diabetes in 1974 and RA in 2000. He was also diagnosed with Ankylosing Spondylitis in 2015. Rick has used six biologic medications and has had several surgeries related to RA. Read more.
Anne-Marie Raymond experienced the onset of AS in her late twenties and was diagnosed at the age of 40. Since then she has been on a quest to live well in spite of her diagnosis. Read more.
In December of 2018, Katie developed a rare infection in her jaw after a standard wisdom tooth removal (osteomyelitis of the mandible). After months of being on oral antibiotics and two failed procedures to clear the infection, Katie had to have a PICC line put in for 12 weeks and receive daily IV antibiotics. Read more.
TK Sellman, RPSGT CCSH is a career journalist (Columbia Chicago, ’90). She was diagnosed with idiopathic hypersomnia in 2010, which inspired her to go back to school to become a sleep technologist in 2012 and a professional sleep educator in 2014. Read more.
Steve first learned he had AS (a disease he’d never heard of) aged 40 and has been living with the condition ever since. At the time of his diagnosis, he was working as a self-employed carpenter in Swindon UK. Read more.
In 2008, Brooke was diagnosed with Left-sided Ulcerative Colitis. Though it was a mild case at diagnosis, the disease rapidly advanced over a period of 4 years. In April 2012, Brooke was given a total colectomy after spending weeks in the hospital fighting a losing battle with her diseased colon. Read more.
James Allen is a health tech entrepreneur who has had ankylosing spondylitis since he was 17. After a severe flare-up in 2013, he decided to leave his job in IT consultancy to find a vocation that was more adaptable to his unpredictable and always changing chronic pain and fatigue. Read more.
Cheryl Crow is a rheumatoid arthritis patient, occupational therapist, advocate and general life enthusiast. She is passionate about helping people with health challenges live their lives to the fullest extent possible. She loves helping people continue to do the things they want and need to do through life hacks, workarounds, mental health coping skills and more! Read more.
Amy has developed her love for yoga and her expertise in physical therapy for over 20 years. She graduated from Ithaca College and has gone on to work with people across many ways of life in Texas, Pennsylvania, Massachusetts and Rhode Island. As a physical therapist and registered yoga teacher, her approach to wellness centers on the innate wisdom within each person. Read more.
Ben Falchi is a seasoned real estate professional who lives with his partner, Lisa Marie Basile (an ankylosing spondylitis patient), in NYC. Read more.
Alastair, originally from New Zealand, is currently living in Copenhagen with his partner. He was diagnosed with AS two years ago after living with the symptoms of the disease for 10 years. Read more.
I am a nurse of 25 years. I have primarily worked in neurosurgery for most of my career. And I absolutely love being a nurse and being a patient advocate. My biggest fear is that people/patient’s don’t know what and who is out there to help them. Read more.
Charis is an award-winning queer disabled chronic disease advocate, writer, speaker and model living with Ankylosing Spondylitis (AS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder. Read more.
Nira A. Hyman is a published essayist. She's a lifelong writer with a BA in English from Yale University. She's committed to spreading AS awareness and advocating for people of color in medicine. When not writing or copyediting, she's unwinding her own symptoms and learning to thrive despite the pain. Read more.
Keegan Matthews-McGee is a stay at home dad, living in Philadelphia with his wonderful wife Auldyn and daughter Kaya. Read more.
I am 27 years old and was diagnosed with AS in February of 2019. However, I have had autoimmune and inflammatory type symptoms since 2012. Before treatment, the pain was impacting my ability to perform my job and also the things I loved. Read more.
Dr. Devon Price is a social psychologist, writer, activist, and professor at Loyola University of Chicago’s School of Continuing and Professional Studies. Read more.
Jayson Sacco was diagnosed at age 14 with Ankylosing Spondylitis. This was before internet or any of the extensive knowledge or medications available now. Through the years due to AS, he has had multiple Iritis flares, bilateral hip replacement, a fused lower back and neck. Read more.
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