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Ankylosing Spondylitis in America 2019

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.

A title that says finally a diagnosis showing that 94% saw more than 1 doctor and 14% saw 10 or more doctors before getting a diagnosis.

The long road to a diagnosis can be lonely and confusing. You might not feel like your pain is taken seriously.

A quote that says “I was often treated like I was seeking drugs. It was isolating and made me doubt myself and feel like a hypochondriac.”

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.

Statistics showing that 7% of people feel their AS is controlled on their current treatment plan and 77% worry that their AS will get worse.

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.

98% of people have other health conditions including arthritis (52%), chronic pain (48%), overweight or obesity (45%), anxiety (42%), neuropathy (38%), fibromyalgia (35%), high blood pressure (35%).

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.

57% feel frustrated that more people don’t know about AS, 64% feel like a burden when talking about their symptoms, 41% feel angry they didn’t receive a diagnosis before symptoms got worse.

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.

67% say AS stops them from doing things others their age do, 60% say AS negatively impacts their work and career, 53% say AS negatively impacts intimate relationships, 26% say AS caused them to go on disability.

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.

To help AS symptoms, 79% drink more water, 77% limit or avoid alcohol, 72% take vitamins or supplements, 54% reduce stress, 55% quit smoking.

Despite how debilitating this disease is, many of you still try to get your laughs in where you can.

To cope with their AS, 53% use humor or laughing, 44% use exercise, 41% use faith or spirituality, 35% binge their favorite TV shows, and 30% vent to friends.

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.

The Ankylosing Spondylitis In America online survey gathered insights from 489 individuals currently suffering from ankylosing spondylitis to better understand their symptoms and management of this condition, as well as the impact on their lives.

Comments

  • Auldyn Matthews-McGee moderator
    2 months ago

    Love love love this! It’s so nice to see so many people having the same thoughts and feelings. Much love to all you AS warriors out there. – Auldyn [Team Member]

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