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Jamilah's symptoms started when she noticed it was getting harder for her to stand up, followed by numbness and tingling sensations in her hands. Within a few months, her symptoms had progressed, and she was living in a wheelchair. Jamilah later discovered she had chronic inflammatory demyelinating polyneuropathy (CIDP).
Eri was no stranger to physical challenges. But when he kept falling while playing basketball, he and his doctors couldn't figure out why. He was having trouble swallowing and lost 20 pounds before he finally - after more than 50 tests - was diagnosed with generalized myasthenia gravis (gMG).
Jamilah and Eri are just two of the many people around the world living with an autoimmune disease. Their experiences of lengthy times to diagnosis, while battling chronic and debilitating symptoms, are shared by the millions of people living with conditions in which their own bodies are turning against them.
According to the Autoimmune Association, the average autoimmune patient sees four doctors over a period of four years before receiving a proper diagnosis. This journey to diagnosis for many patients underscores the need for education and information sharing among healthcare providers about autoimmunity and the growing availability of advanced and precision treatments.
Receiving an autoimmune disease diagnosis can bring relief but it also raises new questions about what comes next on the path to reclaiming a life that looks like it did before navigating a debilitating condition.
"Too many people face years of misdiagnosis, uncertainty, and barriers to treatment, all while managing debilitating symptoms," said Laura Simpson, Chief Operating Officer of the Autoimmune Association. "By raising awareness and prioritizing earlier diagnosis, we can change the trajectory for millions and ensure that no one navigating autoimmunity feels alone in their journey."
The impetus to address these diagnostic and therapeutic gaps is only set to intensify as the incidence rate of autoimmune conditions is forecast to rise in coming years.
A growing and underrecognized health crisis
Despite 1 in 10 people being affected by autoimmune conditions, fewer than 6% of Americans can name an autoimmune disease, the Autoimmune Association has found, leaving many patients feeling isolated and unseen.
Autoimmune diseases are often viewed in isolation and not for their cumulative impact. As a result, the healthcare ecosystem is taking a patchwork approach to addressing the burdens of each disease, rather than considering the totality of their impact.
"We need to see autoimmune disease as a crisis requiring not just medical treatment, but also visibility and compassion for people living with an autoimmune condition," said Christine Gustafson, Executive Director and CEO of the TED Community Organization. "The need has never been clearer for a concerted and sustained effort to make visible patients who remain unseen in plain sight."
This March, members of the autoimmune disease community are using Autoimmune Disease Awareness Month to highlight the need for increased investment into the research and development of innovative diagnostics and treatments, as well as improved care pathways for the millions of people facing these conditions.
"Greater investments in science and medical education to help patients get a diagnosis earlier, and precision treatment to help avoid hospitalization, are some of the ways to help reduce long-term disease and treatment burdens," said Simpson from the Autoimmune Association.
argenx is one company that is inspired by and working alongside the autoimmune disease community to help address their unmet needs. By partnering with pioneering researchers and building relationships with patients and their communities, the company is working to advance immunology breakthroughs with a goal of reaching 50,000 patients globally with their innovative treatments by 2030.
"Relentless innovation in immunology helps to ensure that people with autoimmune diseases have access to even better treatments, as quickly as possible," said Dr. Luc Truyen, Chief Medical Officer at argenx. "Getting patients the care they need and deserve requires innovation across the healthcare ecosystem. At argenx, we co-create alongside patients, because innovation has no meaning without aiming to benefit them."
Creating lasting change
Raising awareness about autoimmune diseases and the experiences of those living with them is more than just a month-long effort - it is an ongoing commitment to advance understanding, advocacy, and action.
To learn more about autoimmune diseases, the experiences of patients like Jamilah and Eri, and argenx's commitment to the autoimmune community, visit https://argenx.com/. To see more of the incredible work being done in the autoimmune community, check out https://tedcommunity.org & https://autoimmune.org/.
