Oh Mama! Pregnancy Planning with a Chronic Illness
AiArthritis Voices 360 Full Episode #11
Air Date: January 26, 2020
This week the show is recorded at the American College of Rheumatology (ACR) annual scientific meeting where patient co-hosts Deb, Mariah, and Tiffany tackle the topic of pregnancy planning with a chronic illness. They also had the opportunity to invite Linette Dyer from Mother to Baby to give input on existing treatment research and safety information.
Mariah is the founder of Mamas Facing Forward, an organization that supports Mothers with chronic illness, and a mother who has experienced both non-medicated and medicated pregnancies. Deb experienced pregnancy when doctors believed that AiArthritis patients could not take any medication during pregnancy or breastfeeding, and Tiffany inquires about concerns from a person who may be interested in planning a family.
Mother to Baby is an organization that collects and analyzes information on the safety of medication during pregnancy and breastfeeding. If you or your partner are thinking about becoming pregnant, this is a can’t-miss episode for you!
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Show Notes: Episode 11 – “Oh Baby! Pregnancy Planning With A Chronic Illness”
00:51 – Tiffany welcomes listeners and fellow patient co-hosts, Deb Constein and Mariah Leach
03:30 - Mariah’s Story
04:35 - Mariah founded Mamas Facing Forward (www.mamasfacingforward.com and private support group on Facebook) to support mothers experiencing chronic illness
07:15 - Pregnant women are under societal pressure to avoid any medication while pregnant, which can be dangerous for both mother and fetus
08:30 - Options for pregnant and breastfeeding women living with AiArthritis are improving due to new research and new data on safety
10:41 - Rheumatologists that have been in practice for a long time may need updated information about treatment options during pregnancy and breastfeeding
11:55 - Women living with a chronic illness need a pregnancy plan to improve outcomes
12:50 - Some women experience temporary remission during pregnancy, but others may have flares or more symptoms while pregnant
13:50 - Patients may not be honest with their rheumatologist about stopping contraception if doctors are not supportive of women’s choices and take an active role in pregnancy planning
15:37 - Pregnancy plans should include a treatment plan even if patients would like to attempt a med-free pregnancy
17:26 - Pregnant women with chronic illness need support and may need assistance in caring for other children
17:45 - AiArthritis women need a post-pregnancy plan because diseases tend to flare immediately after birth
18:45 - Other people may be judgmental about the way new mothers care for their babies due to limitations imposed by their disease
19:30 - Confidence and the ability to advocate for their own needs are critical for new mothers living with AiArthritis diseases
20:03 - New mothers need to be prepared for people to criticize their use of medication
20:44 - Women who need to use formula so they can take certain medicines experience judgment and criticism
23:29 - Researchers cannot conduct clinical trials on pregnant women, but MotherToBaby and other organizations can collect and analyze observational data
23:40 - Pregnant women can contribute to MotherToBaby studies with very little effort required
25:30 - Find a rheumatologist and an Obstetrician that support your pregnancy plan before conceiving if you can
26:27 - lupuspregnancy.org has resources about how to talk to your doctor about your pregnancy plan
29:44 - Tiffany welcomes Lynette from MotherToBaby
30:24 - Lynette explains the work of MotherToBaby
31:35 - Lynette discusses how MotherToBaby obtains their data
32:30 - MotherToBaby believes that all women should have access to medication safety information and that it should be intelligible to them
35:30 - When people claim that a medication-free pregnancy is always safer, they are ignoring the risks of an untreated chronic illness for the mother and the fetus
36:45 - There are new options for safe treatment while breastfeeding
37:35 - Women must be their own advocate when navigating the healthcare system
38:16 - Patients and doctors can visit mothertobaby.org for information on medicine safety, or they can call 1-877-311-8972 to speak to a trained teratogen information specialist
39:01 - Resources about all aspects of pregnancy and motherhood with chronic illness are available at mamasfacingforward.com
40:53 - Tiffany thanks everyone and invites listeners to visit www.aiarthritis.org/podcast to access resources and provide your thoughts on this topic
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
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AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
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Your Co-Hosts & Guests: Who is at the table this episode?
Tiffany Westrich-Robertson
Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels.
Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.
Mariah Leach
Mariah is a writer, patient advocate, and mom of 3 (kids: 7, 5, and 2) who has been living with rheumatoid arthritis since the age of 25. After learning firsthand the challenges of pregnancy and motherhood with a chronic illness, Mariah became passionate about supporting women with chronic illnesses who are or want to become mothers. She launched Mamas Facing Forward in 2015 as a private Facebook community, and today the group and website ( mamasfacingforward.com) unite to provide specialized resources, encouragement, and support for moms and moms-to-be living with chronic illness all over the world.
Website: http://www.mamasfacingforward.com/
Facebook (public):
https://www.facebook.com/mamasfacingforward
Facebook (private group):
https://www.facebook.com/groups/mamasfacingforward/
Twitter:
https://twitter.com/MamasForward
Instagram:
https://www.instagram.com/mamasforward
Deb Constien
Deb has been living with Rheumatoid Arthritis for three decades and while she has experienced disability from it, she never lets her disease dominate how powerful her voice can be.
She has been a key Representative (high level volunteer) for our organization for several years and often takes a leadership role in many programs and mission initiatives, including attending meetings as the voice of the organization. She is also a Platinum Ambassador at the Arthritis Foundation, as well as various other nonprofits, and has formerly and currently used her voice as a Patient Research Partner (Wisconsin Research and Education Network (WREN), OMERACT, Arthritis Power through CreakyJoints and more). She has represented her state of Wisconsin on Capitol Hill and at a local multiples times, and most recently was a key player in helping to pass step therapy legislation in her state.
Linette Dyer
Linette is based out of San Diego, California where MotherToBaby Pregnancy Studies are coordinated. Linette is passionate about making sure every woman has access to accurate information to make the best healthcare decisions possible.
MotherToBaby is the nation's most trusted source of evidence-based information on the safety of medications and other exposures during pregnancy and while breastfeeding.
For MotherToBaby contact info:
Main Website: MotherToBaby.org
Pregnancy Studies Site: MotherToBaby.org/ongoing-studies
Facebook: https://www.facebook.com/MotherToBaby/
Twitter: https://twitter.com/MotherToBaby
Instagram: https://www.instagram.com/mothertobabyotis/
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