Dr. Maeve Gamble
Rheumatologist, Arva Clinic
Jennifer was a 19-year-old student at Laurentian University in Sudbury, ON when she first noticed stiffness and pain in her left wrist. The year was 2012, and she didn’t yet know that she was suffering from ankylosing spondylitis (AS), a form of inflammatory arthritis that affects the spine. As the months went by, Jennifer’s symptoms worsened. “I was developing a lot of infections and rashes, and experiencing joint pain and stiffness in my lower back, hips, knees, wrist, and fingers, which really affected my ability to complete activities of daily living like holding a milk carton, turning door knobs, or standing in the city bus,” Jennifer recalls. “Outside of school, I spent most of my time at the hospital for medical testing and procedures, or the emergency room and clinics due to new and odd symptoms suddenly appearing.”
[the_ad id="12481"][the_ad id="12478"]A lifelong disease, but a manageable one
Once Jennifer was diagnosed with AS four years later in 2016, she was finally able to work with her health care team to develop a treatment plan that worked for her. “The road to finding the right treatment plan is continuous, but fortunately, I’ve always felt well-supported and looked after by my rheumatologist, registered nurse, and other physicians,” Jennifer says. “For the last couple of years or so, I’ve been taking immunosuppressive treatment and disease-modifying anti-rheumatic drugs. I’ve also worked on finding the right balance between exercising and allowing my body to rest. With some time, I became accustomed to this lifestyle and luckily, with time and patience, I was able to find a good treatment plan for me.”
Jennifer expects to be on treatment for the rest of her life, though she feels fortunate to have been able to begin treatment at a relatively young age. As a progressive and incurable autoimmune disease, AS only gets worse over time unless properly managed. “Early detection and treatment are very important,” says Dr. Maeve Gamble, a rheumatologist at Arva Clinic near London, ON. “If left untreated, the joints can become damaged or fused. Once the damage from AS is done, it can’t be reversed. Beyond joint damage, chronic inflammation can have other detrimental effects such as an increase in heart disease and other health conditions.”
Not being a mother has never been an option for me.
Motherhood with ankylosing spondylitis
Her AS now informs every aspect of Jennifer’s life. She chooses lower-impact sports for recreation, receives accommodation for her condition in the workplace, and even takes it into account in family planning with her spouse. “Not being a mother has never been an option for me,” Jennifer says. “Living with arthritis has without a doubt influenced the way we plan on approaching parenthood. Most women my age don’t necessarily have to consider the impacts that treatments, or lack thereof, could have on them and their baby.”
Once thought to be a disease primarily of men, more sophisticated imaging techniques have been detecting AS with even greater frequency among young women, meaning many prospective mothers like Jennifer are facing similar concerns. The most important thing is not to approach it alone. With the help of a health care team, pregnancy and AS are manageable together. “Active disease in early pregnancy and discontinuation of medications are risk factors for the disease flaring,” warns Dr. Gamble, but she adds, “If the disease is well-controlled, and that may require medications considered safe in pregnancy, pregnancy outcomes are very similar to the general population.”
Each patient is unique. Their treatment should be, too.
It has become clear, the secret to a well-controlled disease is a highly-individualized treatment plan. Fortunately, this personalization is becoming more robust as treatment options grow. “This is a great time to be a rheumatologist because there are so many therapeutic options available to patients today,” says Dr. Gamble. “This allows us to personalize treatments for patients. It’s important to involve the patient in the therapeutic decision-making process because this will ultimately improve their compliance and outcomes.”
If you have AS, or a stiff back that improves with activity, don’t be a stranger to your health care team and don’t be afraid to advocate for yourself. By being engaged in your treatment plan, you can ensure that it’s in line with the things that you want in life, and that’s especially critical if you’re a woman thinking about pregnancy. “It’s important to learn about your options in order to make an educated decision regarding what’s most suitable for you,” says Jennifer. “Most importantly, don’t let this disease stop you from achieving your goals and enjoying your life.”
Talk to your rheumatologist for more information.
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