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On Sunday, join International Foundation for AiArthritis and fellow patient cohosts as they lead discussions in the patient community as well as consult with stakeholders worldwide to solve the problems that matter most in the AiArthritis community.
Episodes
Sunday Jan 26, 2020
Sunday Jan 26, 2020
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!
Learn more about Mamas Facing Forward:
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
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).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 11 – “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
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