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.
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.
