The Long Journey to AS: 2019 In America Survey
Ankylosing Spondylitis (AS) is not simply a diagnosis, it’s a journey. It can take years and many healthcare providers to be diagnosed correctly, all while experiencing debilitating symptoms like fatigue and intense pain. It affects how you move through your daily life, and can be so draining.
The diagnosis journey
71% of the people who took the survey were diagnosed within the past 10 years, and 41% began to notice symptoms under 30 years of age. The diagnosis journey takes many years, many doctors, and many different diagnoses before landing on AS. After receiving a diagnosis, those who took the survey reported feeling a range of emotions like depression, devastation, and confusion. But, there was also a reported relief of finally having a diagnosis.
The long road to a diagnosis can be lonely and confusing. You might not feel like your pain is taken seriously.
Treatment satisfaction is low
People with AS are taking control of their care, with 59%* of you playing an active role in determining your treatment plan. You consider many factors when deciding on a treatment plan. The most important factors are efficacy (how well it works) (47%), insurance coverage (44%), and the potential for side effects (43%). While 92% regularly see a healthcare provider, the large majority of people who took the survey do not feel that their condition is under control.
AS is not the only illness
As if AS wasn’t enough to deal with, it’s very common for people with AS to have other health conditions, too.
Living with a condition that feels unknown
It can be emotional to live with a condition that feels unknown to others. Even if other people in your life know what AS is, they may not understand just how painful or draining your day-to-day is.
It affects each and every day
Most people report many different symptoms, but low back pain affects day-to-day life the most. Fatigue was also reported as one of the biggest symptoms that affect your daily life. Flares were an issue for daily functioning as well, with more than 7 in 10 reporting that they had 5+ flares this year that lasted more than a month.
Coping with AS
People with AS have a lot of tips and tricks that they use to help relieve their symptoms and make their lives just a little easier.
Despite how debilitating this disease is, many of you still try to get your laughs in where you can.
Building a community
The road to a diagnosis of ankylosing spondylitis can be long and bumpy. It can feel isolating, confusing, and even scary. Many doctors might not know what is causing your symptoms, and some might even say that your experience isn’t real. We know that’s not true, and that there are many others who share your experience. This community is here for you.