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.
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 womanliving 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.
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.
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.
Self-care for work - it describes how you can adjust non-work activities and manage your arthritis to better participate at work.
Adapting the work environment for arthritis - it describes common workplace challenges and helpful workplace accomodations.
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.
Workplace wisdom from patients (infographic) - this is a crowd sourced solution based on the advice provided by close to 400 people living with 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:
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.
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.
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.
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.
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.
