What he thought was simple lower back pain has impacted his quality of life and his relationships with his family, friends and peers.
“I first felt a lingering pain in the butt area in 1995,” recalls businessman Jun Umali. “I was 29 then, at the prime of my career.”
Jun went to see a rheumatologist, who advised him to undergo a blood test to check if “I am HLA B27 positive.”
The HLA B27 test is done to determine the cause of back and joint pains, stiffness or swelling. A positive result can help your physician make a proper diagnosis.
“Results showed that I am, indeed, HLA B27 positive,” shares Jun. “And my doctor concluded that I have axial spondyloarthritis or axSpA.”
AxSpA is a chronic inflammatory disease of the axial skeleton that causes back pain and stiffness, reduces mobility and impacts one’s quality of life.
“Seventeen years after my diagnosis, the pain had become chronic and more intense,” notes Jun. “This really affected and frightened me.”
The feeling was excruciating enough that Jun had difficulty walking, lifting things, or even getting up from bed.
“Because of my condition, I’m in constant pain and my mobility is limited,” shares Jun. “There are times when I couldn’t do simple household chores or attend social events. It makes me feel embarrassed and incapable of doing things.”
Despite having a loving and supportive family, Jun is aware that not everyone can understand what an AS patient is going through.
“And this would usually cause a strain in our relationships with others, especially if some expectations in the duties and responsibilities aren’t met,” adds Jun, an active member of the Association of Ankylosing Spondylitis Association of the Philippines (ASAph).
Beyond back pain
Back pain is probably the most common ailment we can all relate to. It’s so common, in fact, that many patients shrug off symptoms that might indicate a medical emergency.
“And that’s the reason why we shouldn’t take lower back pain for granted. Because back pain is also the presenting manifestation of an inflammatory type of back pain of patients with axSpA,” explains Dr. Evan Vista, a rheumatologist, during a webinar hosted by Novartis to raise awareness on bone and joint disorders like axSpA, a debilitating spine and joint disease.
AxSpA is an umbrella term that can include non-radiographic axSpA (nr-axSpA), radiographic axSpA known as Ankylosing Spondylitis, as well as other kinds of spondyloarthritis conditions.
Since axSpA is not as common as hypertension and diabetes, most patients don’t take it seriously. When the pain strikes, they just take pain relievers hoping that the pain will go away.
According to Dr. Vista, the golden rule is that if the (back) pain doesn’t go away quickly, or persists for at least three months, it’s time to consult your doctor.
“Early consultation is key to addressing axSpA,” advises Dr. Vista. “Raising awareness among this underserved group of patients who have nr-axSpA, continuing advances in education among clinicians and empowering the patients themselves, we have the chance to prevent disability.”
With early intervention, NR-axSpA patients like Jun could lead a meaningful life, integrate and contribute to society without the burden of the disease during their most productive years.
The International Map of Axial Spondyloarthritis (IMAS) survey, the largest global case study, has found that many patients experience difficulties in daily living, career choices, and even their mental health if the diagnosis and treatment are delayed.
Break free from pain
The good news is, axSpA is treatable and there are several novel treatments available. And proper diagnosis and treatment are crucial for better patient outcomes.
“The COVID-19 pandemic affected the diagnosis and treatment of our patients,” laments Dr. Juan Javier “Jombi” Lichauco, president of the Philippine Rheumatology Association. “Through this renewed partnership with Novartis, we are hopeful that our patients will have better access to information on the disease and novel treatments for this condition.”
Novartis supports PRA’s goal of improving the quality of life of the AS patients.
“Research and development efforts are designed to provide patients with novel medicines and treatments that will let them live pain-free,” enthuses Novartis president and managing director Jugo Tsumura.
Multi-stakeholder partnerships between ASAPh, the PRA and Novartis seek to guide patients and raise awareness about AS.
A recent ASAPh campaign, dubbed “Got UR Back,” encourages patients to “speak their truth” about the pain and real-life complications brought about by their axSpA condition.
From learning about this disease, to early diagnosis, to better treatment access to patients here in the Philippines, the campaign promises that stakeholders have “got their patients’ backs” in that they listen to and plan on acting on the problems that the patients themselves voice out.
In connection to this campaign, Filipinos living with axSpA are invited to share their personal experiences with the debilitating disease by participating in the IMAS online patient experience survey. It is a worldwide anonymous survey to give AS patients a chance to be heard.
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Visit the ASAPh Facebook page at https://www.facebook.com/asaph.org. to learn more about this campaign for AS patients and take the IMAS survey.