PSC Mami: Stories at the intersection of PSC and parenthood. You are diagnosed with a rare, incurable disease. You are young. You had a vision for your future. You wanted kids. But can you? As a parent you want the best for your kids, but then they are diagnosed with PSC, what does their future hold? People who have been there talk about how a diagnosis of Primary Sclerosing Cholangitis, a rare autoimmune disease, reshaped their vision of their lives and parenthood.
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Who is your favorite Latina or Latine photographer? Latina/e photographers have been contributing to the visual narrative of the United States for over a hundred years. These stories are rarely known. Our Latina Lens Podcast, hosted by Monika Aldarondo, elevates the work and stories of accomplished US-based Latina/e photographers across genres. Each photographer will be featured in two episodes. The first episode will explore their creative process and journey with photography. In a second e ...
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Autoimmune Community Voices podcast features conversations with the diverse autoimmune community. This is a podcast of the Autoimmune Community Institute - acicommunity.org
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Nalani Hernandez-Melo Image Tour: Annie Gonzalez, Mr Cartoon, La Curandera
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See images discussed at: https://ourlatinalens.com/podcasts/s1e13-nalani-hernandez-melo-image-tour-annie-gonzalez-mr-cartoon-la-curandera/ Nalani Hernandez-Melo an LA-based photographer, studio owner, gallery director and healer shares about significant images she has taken during her return to Los Angeles and entry to its photography community. Sh…
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Nalani Hernandez-Melo generates opportunities for herself and her community as a photographer and curator
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Nalani Hernandez-Melo is a multi-faceted artist, curator and healer. Her photography journey began at an arts high school and took a winding road through film, the early days of visual curation for social media, and editorial photography and videography. She shares how her love for her culture and community led her to found her own studio, Story an…
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Josie Lepe Image Tour: Candlestick, Detroit, Hertl
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In this Image Tour Josie Lepe, a photojournalist with 20+ years experience and a specialty in Sports Photography takes us behind the scenes of three of her most significant images. She opens with an image that came through preparation, luck, and her playing her part of the team, no matter what. Her historic image of how the 49ers won their last gam…
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Josie Lepe persists and excels as a Sports Photojournalist and visual voice for her community
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Josie Lepe began as a lab tech at the San Jose Mercury News and went on to capture some of the iconic moments in San Francisco Bay Area Sports as a Sports Photographer. She discusses her journey into photojournalism, the challenges she faced as a woman in sports photojournalism, how her culture and background influenced how she approached her work …
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See Karina's Images here: https://ourlatinalens.com/podcasts/s1e9-karina-mora-image-tour/ Karina’s Tours to Mexico https://karinamora.com/mexico2023 Karina Mora Photography site https://karinamora.com/ IG: https://www.instagram.com/karinamora_prints/ Elevating Culturahttps://www.elevatinglacultura.com/ IG: https://www.instagram.com/elevatinglacultu…
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Karina Mora elevates her community and her culture using skills learned as a wedding photographer
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Karina Mora shares how she built a successful wedding photography business and then pivoted to elevate her culture and communities in Chicago and Mexico through photography and entrepreneurship. Karina Mora karinamora.com IG: @karinamora_prints Elevating La Cultura website IG: @elevatinglacultura Other links mentioned: Veronica @goldenmeanboudoir J…
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Cinthia Jaimes Image Tour S1E7 You can view the images for this episode at https://ourlatinalens.com/podcasts/s1e7-cinthia-jaimes-image-tour/ Portrait and boudoir photographer Cinthia Jaimes, known as Cin, shares three of her significant images. These images represent different milestones in Cinthia’s creative journey. The images include a path not…
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Cinthia Jaimes empowers people and uplifts her communities through portrait and boudoir photography
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Cinthia Jaimes is a Portrait and Boudoir photographer based in Dallas, Texas. In this conversation Cinthia discusses her journey to Boudoir, her creative process and the effect that photographing women from a perspective of empowerment and body positivity had on her life. She is frank about her own struggles with mental health and how her mom encou…
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Editorial and Commercial Photographer Amanda López immerses us in the process and context of creating three of her most significant images. She tells us about photographing Mexican actress Kate del Castillo, who she used to watch as a child with her family. Her experience photographing her grandmother and what her grandmother meant to Amanda’s fami…
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Amanda López fosters joy, cultural connection and growth as a portrait photographer
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Editorial and Commercial photographer Amanda López shares how she finds joy in her craft, how her 2nd and 3rd generation Mexican-American upbringing influences her subject matter and the role that mentors and creative community play in her artistic and professional growth.By Our Latina Lens
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In this episode, photojournalist Mabel Jiménez takes us into the circumstances when she created two of her images. The first is an image documenting a farewell ceremony for a mural in the Mission District of San Francisco. A ceremony that she shares encompasses so much more than just a mural. In her second images, a “Pinky Kiss” is a gesture of con…
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Episode 7: Lupus, Diversity Awareness, Latinx Health, and Community with Jessica Castellanos of Public Health Advocates
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Jessica Castellanos is a Communications and PR Manager and host of PHA Radio podcast at Public Health Advocates. Jessica joins us today to tell her story about living with lupus, her diagnosis experience, the experiences of BIPOC patients and unrecognized symptoms, and her tips and advice for those who are new to the lupus or autoimmune experience.…
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Mabel Jiménez connects to community through Visual Journalism
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What happens when you push back against journalistic objectivity? What role do community papers play? How does connection to community affect how you can tell a story? Photographer, photo editor and CatchLight Mentor Mabel Jiménez and host Monika Aldarondo discuss these questions and much more. Mabel shares her experience photographing asylum seeke…
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Elizabeth Ferrer envisions an inclusive American Art History
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In this episode, curator and author Elizabeth Ferrer discusses her research, book and advice for aspiring photographers and curators. transcript and full shownotes at ourlatinalens.com/podcast Elizabethferrer.net IG @evferrer Get Latinx Photography in the United States: A Visual History Info on Luis Carlos Bernal show curated by Elizabeth Epiphania…
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Who is your favorite Latina or Latine photographer? Latina/e photographers have been contributing to the visual narrative of the United States for over a hundred years. These stories are rarely known. Our Latina Lens Podcast, hosted by Monika Aldarondo, elevates the work and stories of accomplished US-based Latina/e photographers across genres. Eac…
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Episode 6: Self Advocacy with Autoimmune Living with Daniel O'Leary
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In this episode, meet Daniel O'Leary, our blog and marketing team volunteer. Daniel shares his autoimmune story, the importance of COVID safety, and how he advocates for his health and others though sharing important autoimmune stories from our community through our blog. Daniel is a college student preparing for medical school where he wants to be…
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Episode 5: Staying Strong with Lupus and Mental Health: Interview with the Lupus Dream Team
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In this episode from this year's Autoimmune Health Equity Summit, we speak to our board member, Emmitt Henderson III and Dion Langley, who together are the Lupus Dream Team. The Dream Team shares information on awarneess of males with lupus, and the importance of staying mentally strong for quality of life. Male Lupus Warriors can be found online a…
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Episode 4: Diagnosed as Undiagnosed - Interview with Leea Sarvela
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What is it like to have a dianosis that is not yet diagnosable? In this episode, we speak to Leea Sarvela, a pre-med student at the Massachusetts College of Pharmacy and Health Sciences, who shares her autoimmune diagnosis experience, which clinicians have not been able to specifically diagnose. Leea shares her experiences over the years and how sh…
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Episode 3: Finding Rare Autoimmune Disease Support with Monika Aldarondo of PSC Mami
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We share a recording of our conversation with Monika Aldarondo of PSC Mami podcast and community from our 2022 Autoimmune Health Equity Summit earlier this year. Monika discusses her rare autoimmune diagnosis of Primary Sclerosing Cholangitis in addition to Ulcertive Colitis, and provides information for our English and Spanish speaking community. …
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Episode 2: The Science of Autoimmune Disease with Dr. Noel Rose
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We were blessed to record this episode with Dr. Noel Rose in 2019 before his passing in 2020, which happened just a week before we started the Autoimmune Community Institute. Dr. Rose is consdered the father of autoimmunology, the first to verify autoimmmune diseases as a legitimate condition rather than a precursor to other diseases. In this episo…
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Episode 1: Introducing the Autoimmune Community Institute
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In our first episode, our host Leea Sarvela interviews Dr. April Moreno, founder of the Autoimmune Community Institute, to introduce the organization to our listeners. Dr. April shares her autoimmune story, the beginning of the organization and why it started, and about the variety of activities we have been working on since we started in 2020. Lea…
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Joanne found community and mission after her son was diagnosed with pediatric PSC over 15 years ago Joanne’s son was diagnosed with Primary Sclerosing Cholangitis at 15 and she has walked the journey with him for over a decade and a half. In doing so, she not only advocates for him but for all PSCers in her work with PSC Partners Seeking a Cure. Sh…
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Stuart makes life changes after PSC diagnosis to spend more time with his family Stuart made a conscious decision to make time for his children and spouse when his Primary Sclerosing Cholangitis diagnosis focused him on what was important in his life. He shares about what it’s like to be the financial provider for his family, the essential role his…
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Laura realigned her life after her diagnosis of Primary Sclerosing Cholangitis. She refocused on family, friends, fun and her dream of becoming an author. Her writing served many purposes at different times, including as long letters to her three daughters, to escape from illness and as a tool for healing. Post-liver transplant, she and her family …
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Jennifer’s experience with organ transplantation comes full circle from agreeing to donate a loved ones organs to being the recipient of part of her husband’s liver through a living donor transplant. She shares her struggles with end-stage autoimmuneBy Monika Aldarondo
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Nicola finds meaning in advocacy after her transplant, post-transplant pregnancy, and surrogacy journey. Family is central to Nicola’s journey. Her younger brother was her donor for her life saving transplant in her 20s. She now focuses on raising her two young sons and creating joyful memories with them. She also works to instill empathy and gener…
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Alicia finds purpose in her toddler as her PSC progresses Alicia was diagnosed with PSC almost 20 years ago. Her PSC has been relatively quiet until this last year. Alicia shares how she deals with this new reality and cares for her 22-month old daughter.By Monika Aldarondo
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Nika and Roberto share what it was like to discuss the risks and benefits of different options for becoming parents. Her diagnoses of Primary Sclerosing Cholangitis and Crohn's caused them to think carefully about pregnancy and parenting. They then shareBy Monika Aldarondo
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By Monika Aldarondo
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Alex discusses her journey up to and following her young child’s diagnosis of Primary Sclerosing Cholangitis. She reflects on her reaction to the diagnosis, how it affected her relationships, and how she was able to move forward and face her child’s aBy Monika Aldarondo
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Amanda was diagnosed with Primary Sclerosing Cholangitis at 23 and one-year into her marriage. A little over a year later, she received a living donor transplant. She shares how her diagnosis and transplant forced her to rethink what her expectations were as she has forged a new life path with flexibility, grief, gratitude, community, redemption an…
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Heather has 2 girls, a new liver, and joy
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Heather was diagnosed with Primary Sclerosing Cholangitis young, then made it through nursing training, graduate school, dating, getting married, and having her first baby before her PSC symptoms started to really affect her quality of life. She speaks about how she and her husband approached having another child, planning for, then recovering from…
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Emily has her son post diagnosis and survives UC, PSC, cancer and transplant with optimism
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Emily has been battling serious illnesses, PSC, UC since she was 19, and liver cancer at 33. As a mother, she has done her best to create an optimistic life with as little fear for her young son as possible as she has survived a colectomy, cancer treatment and a liver transplant. She discusses what it was like to be in survival mode for most of her…
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Natalie explains to her young sons that mommy’s liver works a little differently
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Natalie learned of her PSC diagnosis when her sons were very young. She had been pursuing the “perfect” stay-at-home-mom life and soon discovered that when mother is your central role, PSC will definitely affect how you parent. She shares how she has talked to her sons about PSC and how her family has grown in not only understanding her disease but…
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Serbrina and her marriage survive and thrive post-transplant without children
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Serbrina and her husband survived a 10-year waitlist for her life saving transplant made necessary by the progression of Primary Sclerosing Cholangitis. While her feelings about motherhood at this stage in her life are complex, she holds possibility for that and all areas of her life. She discusses the shifting considerations, emotions, and frames …
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Katrina has second child and peace of mind post PSC diagnosis
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Katrina’s medical journey began at 15 with her Ulcerative Colitis diagnosis, but as she found experts that provided much needed relief, she was diagnosed with Primary Sclerosing Cholangitis. She discusses her shift in outlook, her support system, her second pregnancy and what role PSC plays, or doesn’t, in her day to day life.…
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Jessica decides to not have children and has no regrets
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Jessica’s early and intense introduction to life saving procedures means many discussions about IVF, surrogacy, and adoption with her husband, family and friends. She listens to herself and her body and chooses a path, that while not easy, lives up to her goal of living life without regrets.By Monika Aldarondo
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Kiersten, a child of a PSCer, has 2 healthy children after difficult pregnancies
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Kiersten knew the dangers of Primary Sclerosing Cholangitis as a result of her father’s diagnosis. She faced her own diagnosis as a young adult and found that her PSC had a different progression. In the 3-year window that her doctor gave her, she had two pregnancies that included a lot of uncertainty, bed rest and ultimately, vibrant young children…
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Britt discusses easy 2nd pregnancy after PSC diagnosis
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Britt was diagnosed with Primary Sclerosing Cholangitis when her daughter was 2 years old. Years later she was surprised to find she was pregnant again with her son. She speaks to the emotional process of accepting her diagnosis as a mom, focusing on her health, and re-imagining what her family would look like.…
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