Support - It's a Family Affair
AiArthritis Voices 360 Full Episode 43
Air Date: August 30, 2020
This week join your patient co-hosts Tiffany, Juana, and Estela as they discuss the complicated issues surrounding supporting patients living with AiArthritis diseases and their loved ones.
There is a need for support for AiArthritis patients from their inner circle of family and friends, as well as the support needs of people who have a loved one with a chronic illness. They discuss the importance of open communication in receiving and providing support and the need for raising global education so that patients, family members, and those people in the patient's "inner circle" can better understand their loved ones needs.
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Show Notes: Episode 43 – “Support - It’s a Family Affair”
00:53 - Tiffany welcomes listeners
01:30 - Tiffany is joined today by Estela and Juana Mata, co-founders of Looms 4 Lupus
2:40 - Today’s topic is support for loved ones who are AiArthritis patients
2:47 - Tiffany explains the way the talkshow and the AiArthritis organization approaches projects to help improve the lives of AiArthritis patients
4:18 - Estela and Juana discuss their experience as a family supporting Juana’s battle with Lupus and co-morbidities
5:48 - Family members of AiArthritis patients also require support
9:43 - Support may look very different from one family to the next or even among different members of the same family
13:57 - Family members may need assistance to find the best way to help and support their loved one living with an AiArthritis disease
16:30 - Diagnoses that are more familiar to people like cancer tend to illicit immediate support because people may feel more empathy for conditions they understand
18:18 - AiArthritis patients may face judgment from others because people don’t understand their disease or their limitations
19:01 - Patients sometimes feel pressure to be performative with their illness so that their inner circle will be more supportive
22:52 - Communication between the patient and the family is critical to establishing adequate support
31:24 - It may be more difficult for male patients to ask for or accept the help they need from their loved ones
32:28 - Counseling and support groups can be very beneficial in helping families navigate figuring out how to support each other effectively
35:39 - To share your story on this topic, visit our website at aiarthritis.org/podcast
35:51 - If you are living with an AiArthritis disease, check out the sister site to this podcast at aiarthritisvoices.org and meet any of the Voices 360 co-hosts
36:28 - You can also find Estela and Juana @looms4lupus on all social media platforms or by visiting their website at looms4lupus.org
37:27 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.org
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!
What do you think about this episode?
We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community. Better yet, through these conversations we can start working and developing solutions.
We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!
Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)
Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!
Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!
The AiArthritis Voices Program
Our AiArthritis Voices 360 Talk Show is just a piece of larger program - the AiArthritis Voices Program.
AiArthritis Voices is our 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.
If you want to get more involved, and see more of the opportunities we have for you (and all stakeholders) please check out the AiArthritis Voices Program. Unite with others around the world to talk, learn, and connect.
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.
Juana is a Children Social Worker for the Department of Children and Family Services and was diagnosed with both Systemic Lupus Erythematosus & Rheumatoid Arthritis and she supports her mother who was diagnosed with Osteoarthritis. Juana is Co-founder of Looms for Lupus and a National Patient advocate.
Looms for Lupus is a non profit organization that provides support for those living with Lupus and overlapping conditions and their loved ones. Both Juana and Estela co-facilitate monthly in person bilingual support group in Baldwin Park, CA and online Spanish Support Group via Facebook. They provide support through multiple avenues such as hands-on workshops, informational clinics, bilingual services and psychosomatic support groups.
You can find Looms for Lupus on Facebook, Twitter, and Instagram at @looms4lupus or by visting Looms4Lupus.org.
Estela Mata-Carcamo is the president and co-founder of Looms of Lupus, supporting her sister Juana who is diagnosed with Systemic Erythematosus Lupus, Rheumatoid Arthritis and her mom who lives with Osteoarthritis.
Estela is a National Patient\Caregiver advocate, she lives with Fibromyalgia and also cares for her daughter who was diagnosed with Fibromyalgia and chronic migraines at the age of 13.
Looms for Lupus is a non profit organization that provides support for those living with Lupus and overlapping conditions and their loved ones. Both Juana and Estela co-facilitate monthly in person bilingual support group in Baldwin Park, CA and online Spanish Support Group via Facebook. They provide support through multiple avenues such as hands-on workshops, informational clinics, bilingual services and psychosomatic support groups.
You can find Looms for Lupus on Facebook, Twitter, and Instagram at @looms4lupus or by visting Looms4Lupus.org.
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