Wednesday, November 20, 2019

Mamas Facing Forward at the 2019 American College of Rheumatology Annual Meeting

I was recently lucky to have the opportunity to travel to Atlanta, Georgia to attend the 2019 American College of Rheumatology Annual Meeting (ACR). While it was my sixth year attending the conference, this was the first time I attended officially representing Mamas Facing Forward and as a Patient Partner with the Arthritis Foundation. I'm very glad to have had the chance to represent patients at this important conference - particularly those who are or want to become parents.

Arthritis Foundation Patient Partners getting to work at ACR!


I'm pleased to share that there were multiple sessions at ACR this year focusing on issues of reproductive health for rheumatic disease patients - many more than in previous years! I will have some detailed articles about some of those sessions in the coming weeks. In the meantime, I wanted to share a just a little bit about the experiences of patients at ACR this year.


The Arthritis Foundation had a booth in the exhibit hall at ACR featuring posters from their patient partners - to help conference attendees understand the importance of the patient perspective and the real human impact of rheumatic diseases. In my poster, I shared the impact that rheumatoid arthritis has had on my family - and on the process of starting my family.

At the Arthritis Foundation booth in the Exhibit Hall at ACR



My poster at the Arthritis Foundation booth in the Exhibit Hall at ACR


The Arthritis Foundation blog published several articles featuring the perspectives of their Patient Partners at ACR this year. You can find them here:
I also took the opportunity to chat with the folks at MotherToBaby about the important work that they do. MotherToBaby is the nation’s leading authority and most trusted source of evidence-based information on the safety of medications and other exposures during pregnancy and while breastfeeding. You can learn more about MotherToBaby here.

With Linnette Dyer at the MotherToBaby booth in the Exhibit Hall at ACR.


Lastly, while I was at ACR I had the opportunity to record a podcast with the International Foundation for Autoimmune and Autoinflammatory Arthritis (IFAA). The podcast focused on society's expectations for moms and the importance of pregnancy planning when living with a chronic illness - and how medical providers can help with this process. I'll be sure to share more when the podcast goes live!
Recording the AiArthritis Voices 360 Podcast with Tiffany Westrich-Robertson and Deb Constein of the IFAA and Linette Dyer of MotherToBaby
It was a very exciting conference, particularly as it serves as proof that resources and support is starting to improve for moms and moms-to-be living with chronic illnesses! More detailed information to follow!

This information is brought to you by Mamas Facing Forward and is not sponsored by, nor a part of, the American College of Rheumatology.

Thursday, November 7, 2019

Making decisions about arthritis, medications, and pregnancy— how do you do it?


 
From Mary:
As a researcher and mother to two girls who has experienced being diagnosed with cancer post-partum, I have a unique understanding of the challenges of making personal health decisions when growing a family.

From Nevena:
As a pharmacist and researcher, I am all too familiar with the lack of information on the safety of medication use in pregnancy and I want to change this narrative.    

To do this, we need your help!

We reached out to Mariah to help spread the word about our research study on how women with rheumatoid arthritis make decisions about taking medications before and during pregnancy. Our research has shown that women with rheumatoid arthritis will often stop medications when they become pregnant1 and that they are turning to online communities for support and advice about using medications during pregnancy2. We know that finding the right information about taking medications to safety and effectively manage rheumatoid arthritis is challenging and we want to take the stress out of this process by helping healthcare teams better support women so that they can focus on their pregnancies.


If you are a woman living anywhere in Canada, are between 18-50 years old, have a diagnosis of rheumatoid arthritis, and can communicate in English or French, please consider participating in their study. Your participation will involve a focus group and/or individual interview conducted online, over the phone, or in-person and you will receive a $25 gift card for each interview you participate in as a token of appreciation.

If you are interested in participating, please follow the link: http://tinyurl.com/MOTHERSUBC

For more information, please contact Nevena Rebić, the study coordinator, at: nevena.rebic@ubc.ca or 604.822.5697.


ABOUT AUTHORS:

Dr. Mary De Vera, PhD is an Assistant Professor at the University of British Columbia and Canada Research Chair in Medication Adherence, Utilization, and Outcomes. She is an expert in medications and pregnancy in arthritis.

Nevena Rebić, BSc(Pharm) is a pharmacist and health services researcher at the University of British Columbia who is committed to supporting women access quality reproductive health information and services.


Photo description: Dr. Mary De Vera (right), Louise Gastonguay (centre, French Study Coordinator), and Nevena Rebić (left).  This study is the team’s baby.

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