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Join the “virtual” race to increase public awareness of autoimmune arthritis 

May 20th is World Autoimmune Arthritis Day (WAAD). The International Foundation for Autoimmune Arthritis established this commemorative date back in 2012. The virtual event unites dozen of nonprofits, advocates, and experts from around the world to provide educational and awareness information to autoimmune arthritis patients, their supporters, and the general public.

Participants and partner organizations will participate in a virtual global race by sharing organizational websites and resources via social media posts. WAAD is a 47-hour event hosted on May 20th for the duration of all Time Zones (May 19th 6am EST – May 21st 5am EST).

This year, the goal is to achieve 100,000 virtual miles as a community. Each “like” or “share” on Facebook posts and Twitter tweets equals 1 “awareness mile”. Each “like” or “share” on awareness poster or video posts will earn 10 “awareness miles”. Team ACE will be leading two event with the goal to drive 50 “awareness miles” through Facebook and Twitter:

  1. Team ACE Twitter Poll – ACE will be asking survey questions about arthritis self-care and management. Answers will be summarized and reported out at the end of the campaign. #ACETwitterPoll
  2. Team ACE Facebook Photo Blog – In marketing, it is documented that the human brain can process images up to 60,000 times faster than words. ACE will share pictures, accompanied by a simple text, that represents life with arthritis. #ACEPhotoBlog

You can participate online on Facebook and Twitter and follow the event’s hashtag #WAAD18. On race day, help Team ACE win the autoimmune arthritis awareness race:

The information and resources provided by ACE during #WAAD18 will help people understand the effects of autoimmune arthritis on patients and their caregivers, the economy, and the healthcare system. Patients will learn how to practice self-care at home and at work, such as learning how to exercise and manage pain and stress. Lastly, patients will be able to have meaningful conversations with their health care team members and determine the best treatment possible.

To learn more about the event, please click here. Join the conversation on Facebook at Facebook.com/AIArthritisDay and Facebook.com/ACEJointHealth, and Twitter @AIArthritisDay and @ACEJointHealth by using the hashtag #WAAD18.

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On election day, make your voice count.

The general election in Ontario is scheduled for June 7, 2018. What change would you like to see in models of arthritis care? 

Arthritis is a chronic disease that has a devastating and debilitating effect on the lives of more than 6 million Canadians. In Ontario, 40% of people with arthritis require help with daily activities, compared to 13% of people with other chronic conditions.

More than 1.7 million people – or 1 in 8 Ontarians – are living with osteoarthritis (OA). Within a generation (30 years), it is anticipated that 1 in 4 or 4.28 million Ontarians will be living with OA and one person in Ontario will be diagnosed every 3 minutes.

Rheumatoid arthritis (RA) can occur at any age. More than 105,000 people in Ontario were living with RA. The prevalence of RA is expected to rise by 82% by 2030. In 2040, 225,000 – or 1 in 77 people in Ontario – will be living with RA; one person in Ontario will be diagnosed with RA every 53 minutes.

Ontario’s next government needs to listen and consider the needs of these constituents. Arthritis Consumer Experts (ACE) sent a questionnaire to the party leaders and candidates of the 2018 Ontario Provincial Election.

The questionnaire asked the following questions:

  • What will your government do to bring a high quality, standardized evidence-based model of arthritis care for all Ontario residents?
  • What will your government do to introduce patient education and exercise programs, such as GLA:D, that have been proven to significantly reduce hip or knee osteoarthritis symptoms?
  • What will your government do to improve the uptake of biosimilars and increase accessibility to life saving medications and reduce out-of-pocket costs for Ontario residents living with inflammatory arthritis?
  • What will your government do to improve the healthcare and lives of Aboriginals living with arthritis in Ontario?
  • How will your government establish better prevention programs and facilitate flexible work arrangements to help reduce the direct and indirect costs of arthritis to Ontario employers and the Ontario economy?
  • Will your government take steps to increase the number of rheumatologists and arthritis trained allied health professionals to ensure timely, specialized care for Ontario residents with arthritis?

ACE will be collecting Party and individual candidate’s responses. Responses will be posted on the ON Election 2018 section of ACE’s website as we receive them.

If you have comments, questions, or concerns about any of the answers provided, please take the time to contact the parties. Please click here to view the contact information for the registered political parties in Ontario.

Did their responses help you decide how you will vote? Tell us what you think of their answers. Please contact us by email.

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According to the “Psychological well-being among US adults with arthritis and the unmet need for mental health care” published in the US National Library of Medicine National Institutes of Health, the prevalence of mental health conditions such as depression, anxiety, and serious psychological distress (SPD; a nonspecific indicator of mental health problems) is higher among adults with arthritis compared to the general population.

The study finds that in individuals with arthritis, mental health issues interact with other health conditions and symptoms of arthritis (e.g., pain, fatigue, and disability) such that a decline in one area can directly or indirectly affect the others. Mental health issues can increase the severity of disability, interfere with disease management, and increase disease severity and mortality. Providing mental health support for arthritis patients can improve their overall wellbeing. It has been documented that treating depression can improve medication adherence, and improve both psychological and physical outcomes for patients.

An important strategy for reducing the pain of arthritis is treating your depression. Two approaches can be used, non-pharmacological and pharmacological, together or individually.

Separate from improving mood, antidepressants have been shown to reduce pain in many different chronic conditions, including arthritis, and they work even when depression is not a factor. How these drugs work to reduce pain is not fully understood, but may have to do with improving sleep, relaxing muscles, or increasing neurotransmitters in the spinal cord that are responsible for lessening pain signals.

Please consult your doctor to discuss your treatment options.

There are many strategies you can try, which you may find useful for helping you to avoid or alleviate depression without using drugs. No matter what suggestions you decide will work best for you, we recommend you speak with your doctor or therapist before getting started:

  1. Try to find a way to express your emotions, including thoughts or feelings such as anger, in a safe environment. If you do not feel comfortable speaking with a spouse or friends, then you may want to consider seeing a therapist. If nothing else, keeping a diary might prove useful and it could help you understand your thought patterns and the cycle of depression. Realize, however, that a diary does not provide an exchange of ideas and you run the risk of entrenching your negative emotions. Write your rant, but include a few sentences at the end that begin with: “I appreciate my spouse/doctor/child for . . .” or “Even though I had a hard time getting out of bed this morning, I watched a really funny show/read a good book/had a chance to quietly think alone about . . . ” Also you can read through what you just wrote and think about ways you could have turned a bad situation into a good one or acted differently in response to a negative event. Alternatively, if you can, read your diary to a supportive friend or a therapist.
  2. Consider taking time to examine your support network. How do you feel about the type of social support you get? Is it sufficient? Are you in a relationship in which you have positive support? You may have support from a spouse, but is it problematic support, that is, support that reinforces negative feelings? When you talk about your pain with a partner or friend, do they change the topic, encourage you to stop dwelling, tell you that you worry too much, avoid discussing the problem, are overly helpful, or provide unsolicited or impractical advice (and get annoyed if you don’t follow it)? Do their actions contribute to your positive or negative emotions? If you feel your support network is not helping, consider speaking to a therapist.
  3. Try to train your brain to think more positively (focus on positive events no matter how small or rare they may seem), but try to feel less guilty about your emotions no matter how negative. A positive attitude helps to improve the functioning of the immune and cardiovascular systems, increases the likelihood that you will participate in healthy activities, and can help improve the chances of getting support from friends, family, and the community.
  4. Try to find things to laugh about. Laughter can boost your immune system, but it also just plain feels good. Some people take laughter so seriously, they attend laughing classes at yoga clubs.
  5. Try to stay grounded in reality by not personalizing, or feeling responsible for, negative occurrences, and try not to expect the worst.
  6. If your partner is depressed, that may be affecting how well you cope with arthritis and therefore contributing to your own depression. Consider talking to your partner about also getting treatment and working together to overcome depression.
  7. When you feel safe to, take control by learning everything you can about your disease without overthinking your symptoms. It is important to understand your disease and how it affects your body, but concentrating on your pain too closely can make it take up too much space in your life.
  8. Look for ways to find purpose in your life. If there are activities in your life you can no longer participate in because of your illness, find ones you can do. Fatigue and disability can feel limiting, but people have amazing adaptive abilities. Try not to forget there is always something you can do, something that may never have occurred to you, or you had once thought of doing but were too busy for. You may find, in a strange way, your arthritis has expanded your horizons.
  9. Try to practice mindfulness. Essentially, it means paying close attention to events as they occur in a dispassionate, or non-emotional way. This is a Buddhist concept that is rapidly being taken seriously in the scientific community, particularly in the area of neuroplasticity. Neuroplasticity is the brain’s ability to reorganize itself by forming new neural pathways, which means that our thoughts can change the structure and function of the brain no matter what age we are. For more information on this fascinating topic, read The Brain that Changes Itself by Norman Doidge.
  10. Think about joining a support group, for arthritis and/or depression. Some resources you may find useful in your search include:
  11. As much as you can, attempt to exercise and eat healthfully. To learn more about exercise and arthritis, listen to this podcast by Dr. Linda Li. To learn about the role of nutrition in your health, you will find information in the About Arthritis section of the JointHealth website, under “Diet and Nutrition.”
  12. Try to do what you can to manage your pain.
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Image from Lupus UK

Lupus is the name given to a group of chronic immune diseases. It affects about 15,000 Canadians-approximately one in 2000.

Systemic lupus erythematosus (SLE) occurs when the body’s immune system begins to malfunction and attack healthy tissue in various parts of the body, causing inflammation and damage. Tissues affected can include the skin, joints, muscles, kidneys, lungs, heart, blood vessels, and brain.

Like many other forms of arthritis, lupus occurs more commonly in women than in men-women develop lupus approximately ten times more often than men do. While it can strike at any age, it tends to occur most often between the ages of 15 and 45.

While the exact cause or causes of lupus remain unknown, there are a number of factors which researchers believe may trigger the disease, either alone or in combination with one another. These include genetics, hormones, certain types of antibiotics and other medications, prolonged and severe stress, viruses, and sun exposure.

Diagnosis of lupus

Because lupus can affect so many different areas of the body, the disease often presents very differently from patient to patient. For this reason, lupus is a disease which is often difficult to diagnose. If you experience three or more warning signs of lupus, you should speak with your doctor about looking into the possibility that you may have lupus.

Warning signs include:

  • Swollen or stiff and painful joints
  • Fever
  • Loss of appetite and weight loss
  • Fatigue and low energy
  • Skin rash, especially if brought on by sun exposure
  • Ulcers in the mouth and/or nose, usually painless
  • Pain in the chest while lying down or taking deep breaths
  • Low blood counts, including anemia

While there is no single test for lupus, several blood tests are available which assist doctors in diagnosing lupus. These, combined with other factors such as physical symptoms and sometimes family history, can assist doctors in diagnosing lupus.

Treatment of lupus

If your doctor believes you may have lupus, you will usually be referred to a rheumatologist-a specialist in the treatment of arthritis. Rheumatologists have many years of extra training on top of their regular medical schooling, and are experts at diagnosing and treating lupus.

Once your rheumatologist has diagnosed lupus, there are effective treatments available. While there is no known cure for lupus, treatments focus on controlling symptoms. The goal with any medication used to treat lupus is to bring symptoms under control and bring about remission of the disease. Early treatment minimizes tissue damage, and may also lessen the amount of time a patient needs to stay on high doses of medication.

One simple form of lupus “treatment” often overlooked is using sunblock with a skin protection factor (SPF) of 30 or above. Applying appropriate amounts of sunblock on the face and all areas of skin (the sun goes through thin layers of clothing) 30 minutes before exposure to the sun reduces lupus flares as well as skin cancer.

And finally, maintaining a healthy lifestyle is also a critical part of any lupus treatment plan. Poor diet, lack of exercise, and high levels of stress may encourage flare-ups of disease activity, so healthy eating, gentle exercise, and relaxation are highly recommended.

For more information about Lupus, visit the Lupus Canada website at www.lupuscanada.org.

A conversation with Dr. Janis McCaffrey on life with lupus

ACE has met many amazing mothers who live with arthritis. ACE spoke with Dr. Janis McCaffrey, a general practitioner and mother living with lupus who shared her journey.

Q: What has been your experience living with lupus?

A: I was diagnosed with Lupus at 50 with acute renal failure due to nephritis. I was critically ill and my mother came out to help (it’s supposed to be the other way around!). I could not work. Lupus ‘retired’ me and forced me to give away my practice with more than 2000 patients. After I got off the ‘big’ meds, I had a giant identity crisis and became depressed. How could I suddenly NOT be a doctor? I needed counselling and, thankfully, took and remain on an antidepressant.

To manage my lupus I began a treatment pathway that includes getting deliberate and regular exercise (yoga and tennis for me, but I started with walking!), and having quiet time to consciously set goals. If I can, I read, play chess and many word and number games for my brain. I paint and draw and garden for my psyche. I also have my own book with questions, test results and current medications list to ensure I am prescribed the right medications and maintain good communication with my doctors.

Q: How can caregivers, family, and friends support women living with arthritis?

A: Throw down your calling cards. You’d do it for any of your family and friends, right? My book group and other friends and neighbours rotated a meal to our family as they saw we needed. Extra help with childcare, driving, shopping, ironing, yard work, and handyman chores were appreciated. A friend’s ear is still the best therapy in the world.

Teach your kids to be independent in age appropriate ways: to clean their rooms, do their laundry, take the bus, make their lunches, share household chores. Thank, play with, and treat them regularly.

Partners need to be intimately honest (relationship-wise, sexually, emotionally) and figure out together what to do and what will work. Be brave, and get some help if you need it.

Q: Do you consider yourself a role model?

A: Physicians I learned from were role models whether they wanted to be or not. I think a position of influence always presents an opportunity of being a role model. We act accordingly: professional, inherently teaching to whoever is listening, often the patient, their family, staff, colleagues, and we are always learning from others if we have our eyes and ears open!

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On National Nurses Week, we want to thank you to all the nurses in the world!

Picture of nurses from American Nurses Association

Nurses play a major multidisciplinary role in health education and management of arthritis in the community. Patients living with extensive joint damage need ongoing treatment, care, and monitoring, along with motivation and instructions to adhere to prescribed drug therapies. The best way to do so is through a multidisciplinary approach where a varied healthcare team is made available to the patient. This team may include a rheumatologist, rheumatology nurse, registered nurse, pharmacist, physical therapist, occupational therapist, podiatrist, physician assistant, social worker, dietician, and counsellor. To ensure optimal physical, psychological, and social functioning and quality of life, the team provides education and support based on the patient’s goals.

Nurses can help patients manage and coordinate the plan of care established by their rheumatologist. We have outlined the role of the nurse in the disease journey below. Are you a nurse practitioner? Email us at feedback@jointhealth.org and tell us what you do to help patients!

Initial assessment

During the initial assessment, a nurse can help alleviate a patient’s anxiety, anger, frustration, and depression by establishing a therapeutic relationship with the patient and his or her caregiver. Nurses can also assess the patient and caregiver’s understanding of the disease and its management, and evaluate their physical, emotional, and psychological well-being.

Monitoring disease symptoms

Nurses are able to recognize the signs and symptoms associated with arthritis. They can use the information observed and given to them to identify the appropriate nursing diagnosis. A nursing diagnosis may be part of the nursing process and is a clinical judgment about individual, family, or community experiences/responses to actual or potential health problems/life processes. For example, American Nurse Today states that the common nursing diagnosis for patients with rheumatoid arthritis are “pain and discomfort, activity intolerance and impaired mobility, self-care deficits, fall risk, ineffective coping, altered body image or role performance, ineffective health maintenance, nonadherence to the therapeutic regimen, and caregiver role strain.”

Care planning

Nurses can work with the patient and caregiver to set measurable short-term and long-term goals to ensure optimal patient outcomes. Nurses encourage patients to learn and participate in their own care by:

  • reinforcing the multidisciplinary team approach to care
  • discussing psychological factors related to arthritis, such as depression, anxiety and stress
  • explaining medication and treatment therapies to treat and manage arthritis
  • discussing nonpharmacologic approaches to manage arthritis symptoms, such as heat and cold therapy, joint protection, range-of-motion and strengthening exercises, and complementary and alternative therapies (as prescribed by the provider)

Nurses are encouraged to ask open-ended questions and reminded to be sensitive to cultural preferences and family communication styles, and avoid arguing with the patient or caregiver.

Implementing the care plan 

After reviewing a patient’s care plan, nurses can implement evidence-based strategies based on established priorities, and provide patient education. Nurses can provide assistance in this phase in the following ways:

  • discuss the importance of adhering to prescribed drug therapy and nonpharmacologic treatment to control pain and achieve remission
  • review the signs and symptoms of arthritis with the patient and caregiver
  • identify the learning styles of the patient and caregiver
  • discuss the adverse reactions, drug interactions, and use of herbal and complementary remedies with prescribed medications
  • monitor medication efficacy and the patient’s tolerance
  • promote self-care practices
  • discuss ways to cope with stress or depression
  • review and obtain appropriate adaptive devices to help patients with daily living
  • provide resources on arthritis and information on how to connect with local support groups
  • teach the patient and caregiver how to recognize and manage flares and other complications associated with arthritis
  • remind and schedule patients for follow-up appointments

Evaluating outcomes

Nurses can help patients determine if the expected outcomes and goals of care are being met. They can:

  • monitor medication therapy, including efficacy, side effects, and assessing changes in signs and symptoms associated with arthritis (morning stiffness, fatigue, painful or swollen joints)
  • inform other health care team members of the effectiveness of medications, nonpharmacologic measures, and disease progress
  • collaborate with other health care team members to help the patient or caregiver achieve unmet goals
  • work with the patient and caregiver to adjust or create new goals according to current outcomes
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In Arthritis Consumer Experts’ (ACE) April JointHealth insight, we explore what “personalized and precision medicine” – the theme to this year’s Canadian Rheumatology Association Annual Meeting and Arthritis Health Professions Association Annual Meeting – means to arthritis patients and health care providers. To help you, we have prepared a curated guide to a selection of #CRArthritis interviews, outlining key points covered during the event.

Among the topics of interest to patients, the interviews provide information on:

  • Personalized and precision medicine
  • Juvenile arthritis
  • Spondyloarthritis and psoriatic arthritis – Advancements in diagnosis and therapy
  • Giant cell arteritis and vasculitis
  • Exercise as medicine
  • Nutrition
  • Pregnancy
  • Medication adherence
  • Medical marijuana and pain management
  • Improving access to and quality of arthritis care
  • New research on preventing rheumatoid arthritis
  • Communicating with your doctor
  • Teamwork and patient-centred care in arthritis Models of Care
All interviews can be accessed through YouTube, Twitter, and Facebook.
  

To turn on French subtitles, please adjust the YouTube settings for each interview.
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Arthritis Broadcast Network ranked #5 on Feedspot’s Top 20 Arthritis YouTube channels to Follow

Thanks to our growing audience, Arthritis Broadcast Network (ABN) – powered by Arthritis Consumer Experts – has the most videos and views on a Canadian channel!

Arthritis Broadcast Network has been ranked #5 on the top 20 arthritis YouTube channels to follow by Feedspot. Rankings are based on the following criteria:

  • Total YouTube channel subscribers, video views, and video uploads
  • Quality and consistency of videos
  • YouTube search ranking
  • Feedspot editorial team’s objective and subjective review

On Feedspot’s list, ABN has the most videos and views on a Canadian channel – a total of 200 videos and 242,489 views!

Arthritis Broadcast Network’s channel provides information about the different types of arthritis, pain management, self-care, exercise, nutrition, models of care, patient engagement, research, and many other topics valuable to the arthritis community. Please show your support and help others living with arthritis by doing the following:

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The Canadian Spondylitis Association will be hosting a Spondyloarthritis Information Session tomorrow in Halifax!

You can join in-person in Halifax or on the live stream tomorrow morning from the comfort of your home from anywhere!

If you are attending in person, the event will take place in the BMO Community Room on the second floor of the Halifax Central Library on Spring Garden Road. Registration starts at 9:15 am.

The live stream of the event will start at approximately 9:30 am AST/8:30 am EST/5:30 am PST. To join online, click the following link: http://www.spondylitis.ca/the-latest/live-event/ 

In case you are unable to access the link above, please try: https://livestream.com/45north/events/8157608

To ensure a smooth live streaming experience, make sure you have a strong internet connection or cellular network if you are participating from your mobile devices. To ask questions during the event, email questions@spondylitis.ca

Please ensure your volume is adjusted appropriately to hear the broadcast.

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Do you have severe pain? We need your valuable input. 

The Common Drug Review (CDR) is currently welcoming patients and their caregivers to provide input to patient organizations on the manufacturer’s submission for tapentadol hydrochloride (Nucynta) for the management of pain severe enough to require daily, continuous, long-term opioid treatment, and:

  • that is opioid-responsive; and
  • for which alternative treatment options are inadequate.

The CDR is part of the Canadian Agency for Drugs and Technologies in Health (CADTH). The CDR conducts objective, rigorous reviews of the clinical and cost-effectiveness of drugs, and provides formulary listing recommendations to the publicly funded drug plans in Canada (except Quebec).

To help them make their recommendations, the CDR accepts input from patient organizations and groups, like Arthritis Consumer Experts (ACE). Because patient input is vitally important to government decision-making about medications, we would like to gather your views and share them with the CDR.

These are the questions they are asking:

  1. How does severe pain impact the patients’ day-to-day life and quality of life? For example, what aspects of pain are more important to control, and are there any activities that the patient is not able to do as a result of severe pain?
  2. How well are patients managing severe pain with currently available treatments? Examples of the types of information to be included in the answer are:
    • What therapy are patients using to manage severe pain?
    • How effective are current treatments in controlling the common aspects of severe pain?
    • Are there needs, experienced by some or many patients, which are not being met by the current treatments? What are these needs?
    • Do current treatments have adverse effects that are more difficult to tolerate than others? What are they?
    • Do patients have difficulty accessing current treatments because of costs, such as costs related to travel and drug administration costs?
  3. How does severe pain impact the patients’ caregivers?
    • What challenges do family and friends who support a patient to manage severe pain face?
    • What impact does the treatment have on the caregiver’s daily life, such as emotional/psychological effects, fatigue, stress, and physical challenges?
  4. What are patients’ expectations for tapentadol hydrochloride?
    • What are the perceived advantages or disadvantages?
    • What are the aspects of the patients’ severe pain that it is hoped will be addressed?
    • How might daily life and quality of life for patients, caregivers, and families be different if the new treatment provided desired improvements?
    • What trade-offs do patients, families and caregivers consider when choosing a therapy?
  5. Has the patient tried tapentadol hydrochloride to manage severe pain?
    • What were the benefits or disadvantages of tapentadol hydrochloride?
    • How did the benefits or disadvantages impact the lives of patients, caregivers, and families?
    • Did the patient experience any side effects and were they tolerated? How were the side effects managed?
    • Was the drug easier to use than previous therapies? How so?

If you live with or care for someone with severe pain and who meets the criteria stated at the beginning of this notice, please send us your input by Friday, May 4, 2018, so that we may make a submission by the May 8th deadline. Your input will be anonymous.

Please contact us at feedback@jointhealth.org to provide your input or arrange for a phone interview at 604-974-1366.

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Please take a few minutes to complete a short survey to help the Canadian Spondylitis Association help you. 

A co-morbidity is not a side effect.

A focus of the Canadian Spondylitis Association (CSA) in 2018 will be on highlighting and educating members about co-morbidities that are associated with spondyloarthritis. The CSA are forming partnerships to bring you the education and support that you should have. Individuals are sometimes diagnosed because of a co-morbidity or by a professional outside of rheumatology. In some cases, diagnosis is delayed due to the complexities of spondyloarthritis and its many co-morbidities.

Stand-up to spondyloarthritis! Together we can make a difference. Please take a few minutes of your time to complete a short survey to help the CSA help you.

The CSA will be updating their website with information on co-morbidities and include articles in upcoming newsletters highlighting a co-morbidity.

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