Monday, October 7, 2019

Supporting #ArthritisAtWork

One of the more stressful aspects of living with arthritis can often be figuring out how to manage arthritis and daily life at the same time. For me, this issue has appeared mostly when it comes to motherhood - which is why I started Mamas Facing Forward.

But for those who work outside the home, there's also the issue of how to manage arthritis in the workplace - such as figuring out what adaptations might be necessary, deciding when to reveal your arthritis to your boss or co-workers, or making sure you understand your workplace rights.

Laurie Proulx has lived with Juvenile Rheumatoid Arthritis for 28 years and it is her experiences that led her to the Canadian Arthritis Patient Alliance (CAPA) where she advocates for increased arthritis awareness and the adoption of more inclusive, patient-centred policies and practices. She is currently a Board Member and 2nd Vice-President with CAPA and has been actively involved in the organization for over 10 years. In this role, she represents the patient voice on various health policy issues, led a project on pregnancy and parenting with arthritis and arthritis in the workplace, and works as a patient partner in research. Laurie lives in Ottawa with her husband and two children.. Here, she shares the experiences that led her to the development of the Canadian Arthritis Patient Alliance (CAPA) workplace resources you'll find below:

I’ve lived with rheumatoid arthritis since childhood so I know all too well how this disease affects every aspect of life. I had difficulties in school, it affected my family, and it influenced my career choices and participation at work. Early in my career, I pushed myself to ‘fit into’ the workplace but looking back, I know it negatively affected my health. I never spoke about arthritis with my employer until I had children - I couldn’t manage the disease with all of life’s new responsibilities as a parent.
I knew that if I was having difficulties at work, others were too. I volunteer with the Canadian Arthritis Patient Alliance (CAPA) and I pitched the idea for a workplace project to our Board of Directors who all live with arthritis. They were overwhelmingly supportive – many on our Board have struggled to stay employed and healthy.

The first step of the project was to launch a survey to better understand the workplace challenges of people living with arthritis and what they’ve done to stay in the workplace (you can view a poster on the results here). Unsurprisingly, 85% of people with arthritis reported that arthritis affects them in the workplace. Some of their key challenges were that work takes them away from life activities, and they have difficulties in staying focused due to fatigue. People were also asked what worked for them and how effective personal and workplace adaptations work them. These survey results informed the development of workplace resources to help people with arthritis at work. The workplace resources were reviewed by Dr. Arif Jetha, a Scientist at the Institute for Work and Health in Toronto, Canada who studies how to support people with disabilities in the workplace. 

The workplace resources are organized into four different modules:
  1. Self-care for work - it describes how you can adjust non-work activities and manage your arthritis to better participate at work.
  2. Adapting the work environment for arthritis - it describes common workplace challenges and helpful workplace accomodations.
  3. Knowing your workplace rights - it describes the laws in Canada to accomodate people with disabilities at work. Although this information is specific to Canada, you can check out a disclosure checklist on page 3 to guide you in deciding whether to disclose information about arthritis to your employer.
  4. Workplace wisdom from patients (infographic) - this is a crowd sourced solution based on the advice provided by close to 400 people living with arthritis.

The project isn’t over either – CAPA is hosting a Twitter Chat
on #arthritisatwork on World Arthritis Day. 
The Twitter Chat will be on October 12 at 1 p.m. Eastern. 
We hope to see you there! 
 

Monday, July 8, 2019

RESEARCH OPPORTUNITY: KickStart30: A 30-Day Intervention for Patients with Rheumatoid Arthritis

I'm a big fan of research aimed at improving the lives of people living with rheumatoid arthritis, so I wanted to share this research opportunity from the University of Texas at Austin:


The purpose of this study, “KickStart30: A 30-Day Intervention for Patients with Rheumatoid Arthritis,” is to explore the efficacy and feasibility of an integrated, prescriptive, and trackable wellness intervention combining five wellness elements including exercise, mindfulness, sleep, social connectedness, and nutrition. Eligible participants include:
  • Adults (18+) interested in improving their overall wellness
  • Received a diagnosis of Rheumatoid Arthritis (RA) from a Rheumatologist
  • Currently taking a biologic medication or a JAK inhibitor for the treatment of RA including one more more of the following: Orencia (intravenous infusion or subcutaneous injection), Humira (subcutaneous injection), Kineret (subcutaneous injection), Cimzia (subcutaneous injection), Enbrel (subcutaneous injection), Simponi (subcutaneous injection), Simponi Aria (intravenous infusion), Remicade (intravenous infusion), Kevzara (subcutaneous injection), Rituxan (intravenous infusion), Actemra (intravenous infusion or subcutaneous injection), Olumiant (oral administration), Xeljanz (oral administration)
  • Must not be pregnant or plan to get pregnant during the 30-day study
  • English-speaking
  • Must have access to a reliable Internet-enabled computer
  • Must possess basic computer skills
The study involves participating in a 30-day integrated, prescriptive, trackable wellness intervention,
which includes five wellness elements: exercise, mindfulness, sleep, social connectedness, and nutrition. Additional program requirements include:
  • Implementing 5 wellness interventions daily during the 30-day study
  • Documenting daily online adherence
  • Completing daily HERO (happiness, enthusiasm, resilience, and optimism) exercises to improve your mental wellness
  • Completing online program forms prior to beginning the program and again at 30-days upon completion of the study
All information collected will be kept confidential. Participation is completely voluntary and can be
discontinued at any time without repercussion. There are minimal risks to participating in this study.

Potential benefits that participants may expect from this study include no-cost wellness
information/practices for both physical and mental wellbeing. You will also help researchers in the
advancement of research regarding wellness as a clinical and community-based intervention.

Researchers: Drs. Saundra Jain and Donna Rolin
To volunteer or for more information, please contact Study Personnel at 855.266.9222.
Prior to calling, please watch the study overview video:



Tuesday, April 23, 2019

Healthline's Best Rheumatoid Arthritis Blogs of 2019

I'm honored to be selected as one of Healthline's best rheumatoid arthritis blogs of 2019 - alongside some of my favorite people! 

You can check out the full 2019 list here.

Tuesday, April 2, 2019

Brain Fog and RA - What Do Researchers Know?

While "brain fog" isn't a medical term, I've heard anecdotally that many people living with RA have experienced it themselves....As it turns out, there has been some research on this subject.

Wednesday, February 27, 2019

Could a Mummy Hold the Key to An Arthritis Cure?

Scientists are studying a mummy that was discovered in a convent in the town of Guano, Ecuador. They believe that further examination of it could uncover a missing link that allows scientists to better understand the origin and natural history of RA.

Monday, February 11, 2019

Could A Scorpion Take the Sting Out of RA?

Ever since I was first diagnosed with RA, I’ve kept my fingers crossed for scientists to identify new treatments or even to find a cure. From parasitic worms to an electrical implant in the brain to a peptide found only in old world monkeys, I’ve seen RA research take some very interesting paths over the last ten years. And here’s another one:

A group of researchers has found that one of the hundreds of components in scorpion venom can reduce the severity of RA in animal models.

Monday, January 28, 2019

American College of Rheumatology Issues Guidelines for Reproductive Health

In October 2018, the American College of Rheumatology (ACR) presented brand new clinical guidelines on reproductive health. This is very exciting news for patients living with rheumatoid arthritis, particularly women, as it gives our rheumatologists a consistent, peer-reviewed set of recommendations to answer important questions about contraception, fertility, pregnancy, breastfeeding, and menopause.

Wednesday, November 28, 2018

Yahoo! Lifestyle: The struggles of being a mom with painful arthritis

I recently had the opportunity to chat with Yahoo! Lifestyle about the challenges of being a mom with a chronic illness. The article also gave me a chance to share more about why I started Mamas Facing Forward and how I hope to continue helping moms in the future! Click below to read the full article:

Yahoo! Lifestyle


Thursday, November 15, 2018

RA Research Study That Pays $190

This post is sponsored by Video Chat Network

Since I was originally diagnosed with rheumatoid arthritis (RA) ten years ago, I've noticed that companies have become a lot more interested in giving patients the opportunity to provide real feedback on the patient experience. This is important not only to shape products and experiences for future patients, but also because some of these opportunities compensate patients for their time and expertise - and we all know that life with RA comes with a financial burden as well! So I wanted to share an opportunity that gives patients living with RA the opportunity to earn $190 for sharing their perspectives.

Video Chat Network is an independent research firm engaged in a project to learn about the current challenges, experiences, and best practices for living your life with RA. They are looking to interview patients who have been diagnosed with RA for more than three months and who are currently on a regimen that includes DMARDs (such as Celebrex, Trexall/methotrexate, or Plaquenil) or advanced therapy biologics (such as Humira, Simponi, or Orencia) in either pill, injection, or infusion form. 

Participants will be asked about their thoughts and experiences during the process of finding a treatment plan that works best for them. This input will affect how information about new and upcoming treatment options are presented to future patients.

If you are over 18 and interested in participating in a one-hour video chat interview, you will be compensated $190 for your time and opinions.

If you can refer other RA patients, you will be compensated $50 for every interview performed that your referral provides.

As a patient myself, I was sure to ask the study organizers about their privacy policies before deciding to share this opportunity with my readers. They assured me that the video interviews would be recorded for internal reference and study analysis only, and that participants names will not be revealed. The learning from all respondents will be pooled together and analyzed and no personal identifying information will be revealed to the client. 

To find out if you qualify, please click here and fill out the online questionnaire.

Monday, November 5, 2018

October Articles for Rheumatology Network - ACR 2018

My assignments for Rheumatology Network include reporting on recent scientific studies about rheumatoid arthritis and other related diseases. For the month of October my articles focus on coverage of the American College of Rheumatology Annual Meeting that took place in Chicago, Illinois.

Although these articles are intended primarily for a physician audience, I know patients are also interested in scientific advances. If you ever have additional questions, please don't hesitate to let me know!

New recommendations cover pre-conception assessment, pregnancy-compatible medications, breastfeeding, and contraception for rheumatology patients.

New guidelines have been drafted for the treatment of JIA, specifically addressing therapeutic approaches for non-systemic polyarthritis, sacroiilitis, and enthesitis. 

The pros and cons of HCQ dosing guidelines to limit potential eye toxicity were explored at this year's ACR/ARHP Annual Meeting.

Findings from the first study to incorporate a meta-analysis on TNFi dose adjustment in an axSpA population.

Seropositivity was strongly associated with ILD risk in this large prospective cohort study. 

British researchers quantified the burden of continuing weight gain on the risk of PsA. 

Be alert for the development of uveitis in older patients with gout, especially those who have multiple comorbidities.