VoiceForIBD's Avatar

VoiceForIBD

@voiceforibd.bsky.social

IBD Patient Advocate💜🧬 Hispanic/Latina🇵🇪🇺🇸 Crohn’s & Colitis Foundation National Board of Trustees #CrohnsDisease & #UlcerativeColitis🦠 Committed To Finding A Cure🔬🧬

167 Followers  |  126 Following  |  129 Posts  |  Joined: 10.11.2024
Posts Following

Posts by VoiceForIBD (@voiceforibd.bsky.social)

Video thumbnail

In Jan, while battling COVID & Influenza A, I ended up in the ED & learned I was experiencing symptomatic #gallstones
As someone w/ #Crohns (and prior ileal resection), we’re at higher risk 😱

Patients: Have you discussed w/your GI?

HCPs: Are you discussing w/your patients?

27.02.2026 17:12 — 👍 1    🔁 0    💬 0    📌 0
Video thumbnail

On Sat, 3/21, our #IBD community is coming together in #OC for a full day of #education I’ll be moderating a special session: MyIBD Connections for the #Hispanic & #Latino Community

📍: Courtyard Marriott Irvine Spectrum
📅: Sat, 3/21
⏰: 9 AM–2 PM
🔗 bit.ly/MyIBDLearnin...

11.02.2026 17:45 — 👍 2    🔁 1    💬 0    📌 0
Video thumbnail

Moments of representation matter-on a global stage & in #healthcare Seeing culture celebrated openly is a reminder of how important #language #identity & feeling understood are. That’s why our virtual Spanish-language #IBD #supportgroup exists👇🏼 Please share!

For more info: bit.ly/3PgXNis

09.02.2026 21:45 — 👍 2    🔁 0    💬 0    📌 0

@amergastroassn.bsky.social
@crohnscolitisfdn.bsky.social

30.01.2026 17:51 — 👍 1    🔁 0    💬 0    📌 0
Video thumbnail

Reflecting on my time at #CCCongress26 in Las Vegas💙As a #patient #advocate & someone living w/ #IBD it’s a privilege I don’t take lightly🥹To witness cutting-edge research🔬emerging treatments🧬 & the commitment of clinicians & researchers who care about patients is powerful💥

30.01.2026 17:51 — 👍 2    🔁 0    💬 1    📌 0
Post image Post image

As a #fistula patient myself, I know all too well the trauma that #IBD patients go through when living w/ #perianal disease. So valuable for the patient perspective & mental health recommendations to be shared & discussed at #CCCongress26

@amergastroassn.bsky.social
@crohnscolitisfdn.bsky.social

23.01.2026 23:00 — 👍 2    🔁 0    💬 0    📌 0
Post image Post image Post image Post image

So insightful to hear Dr. Marla Dubinsky summarize the the right drug at the right time in #IBD So many considerations for patients & clinicians #CCCongress26

@amergastroassn.bsky.social
@crohnscolitisfdn.bsky.social

23.01.2026 22:59 — 👍 2    🔁 0    💬 0    📌 0
Post image Post image

Grateful for Dr. Larry Kim’s leadership of the @amergastroassn.bsky.social 🎉 Beyond appreciative of the @crohnscolitisfdn.bsky.social incredible commitment to #IBD patients. Thank you Dr. Alan Moss (Chief Scientific Officer) for leading IBD scientific advancements at the Foundation🥹 #CCCongress26

23.01.2026 17:00 — 👍 2    🔁 0    💬 0    📌 0
Post image Post image Post image

Key summaries of all of the latest advancements in treatment for both #CD and #UC at #CCCongress26 at #IBD 101, including bone marrow transplant success for CD (in Europe)🎉

@amergastroassn.bsky.social
@crohnscolitisfdn.bsky.social

22.01.2026 19:04 — 👍 1    🔁 0    💬 0    📌 0
Video thumbnail

Patient voices in #IBD #research matter. Both @ownyourcrohns.bsky.social
& @voiceforibd.bsky.social had the honor to contribute to a @bmj.com State of the Art Review on IBD medical mgmt, written for clinicians & including a patient perspective section to ground PROs👇🏼

🔗 bit.ly/MedicalMgmtO...

07.01.2026 16:07 — 👍 6    🔁 3    💬 0    📌 1
Video thumbnail

This Saltado de Vegetales is personal-a Peruvian dish I grew up with🇵🇪adapted to be gut-friendly👏🏼 Proud to see it featured on the @crohnscolitisfdn.bsky.social
Gut Friendly Recipes, a 🆓 dietitian-reviewed resource expanding cultural representation🌎#IBD #Nutrition

🔗 bit.ly/SaltadoDeVeg...

05.01.2026 14:08 — 👍 1    🔁 0    💬 0    📌 0
Video thumbnail

Flavor doesn’t have to disappear when living with IBD. Here’s how to add it back…safely👇🏼

🌿Green herbs & milder spices during flares
🌿Wider range of spices & flavors when in remission
📉Turmeric & ginger may offer anti-inflammatory properties
☕️Decaf herbal teas are a flavorful, gut-friendly option

23.12.2025 17:29 — 👍 1    🔁 0    💬 0    📌 0
Video thumbnail

IBD looks like strength, resilience & HOPE💛IBD looks like all of us…showing up, speaking up & believing in what’s possible. Hope lives here. And we’re just getting started. La esperanza también vive aquí y lo mejor todavía está por venir #IBDLooksLike #CCAwarenessWeek
@crohnscolitisfdn.bsky.social

07.12.2025 22:24 — 👍 2    🔁 0    💬 0    📌 0
Video thumbnail

#IBDLooksLike advocacy📣 Because raising our voices is how we create change - for ourselves, for our communities & for the future of IBD care👊🏼 Watch below to see what my advocacy looks like 👇🏼 @crohnscolitisfdn.bsky.social

07.12.2025 03:22 — 👍 1    🔁 0    💬 0    📌 0
Video thumbnail

IBD looks like community. Because none of us should navigate this disease alone. On day 4 of Crohn’s & Colitis Awareness Week, I’m sharing glimpses into the power of #IBD community in my journey. #IBDLooksLike community…together we are stronger 💪🏼 🤍

@crohnscolitisfdn.bsky.social

05.12.2025 16:22 — 👍 2    🔁 0    💬 1    📌 0
Video thumbnail

#IBD looks like more than anyone realizes 👀 It’s the complications that show up beyond the digestive system or #extraintestinal manifestations😔This Awareness Week, I’m sharing what #IBDLooksLike so more patients feel seen & clinicians understand the full picture #EIMs
@crohnscolitisfdn.bsky.social

04.12.2025 19:44 — 👍 1    🔁 0    💬 0    📌 0
Video thumbnail

IBD Looks Like Strength You Don’t See. Most people don’t see what living with IBD really looks like. We carry so much…quietly😔 #IBD looks like me🙋🏻‍♀️It looks like you🫵🏼 It looks like millions of us doing our best every single day🙌🏼

🔗Awareness Week: bit.ly/CrohnsColiti...

@crohnscolitisfdn.bsky.social

03.12.2025 16:27 — 👍 1    🔁 0    💬 0    📌 0
Video thumbnail

As a Social Media Ambassador & National Board of Trustees member for the @crohnscolitisfdn.bsky.social I’m sharing what #IBDLooksLike 🙋🏻‍♀️But #IBD isn’t one story…it’s millions around the 🌍

Share your story w/#IBDLooksLike & donate $50+ to get the 2025 Awareness 👕

🔗 bit.ly/2025CCAWShirt

02.12.2025 15:34 — 👍 1    🔁 0    💬 0    📌 0
Video thumbnail

Crohn’s & Colitis Awareness Week runs from Dec 1st-Dec 7th🗓️

To kick things off, I want to highlight a powerful free resource from the @crohnscolitisfdn.bsky.social - the 🆓 Real Life with IBD Guide🗒️ designed to help patients navigate realities of #IBD

DOWNLOAD 🔗 bit.ly/CrohnsColiti...

01.12.2025 16:07 — 👍 1    🔁 0    💬 0    📌 0
Post image

The IBD Social Circle recently released a white paper on the “Power of Community” in #IBD If you’ll be at #AIBD and/or already live in Orlando, join us next Sat, Dec. 6, for a live panel discussion on key topics from the white paper 📄 RSVP to 📧 IBDSocialCircle@its.jnj.com

29.11.2025 17:20 — 👍 1    🔁 0    💬 0    📌 0
Video thumbnail

Extraintestinal manifestations can appear before an #IBD diagnosis & are underrecognized in #Hispanic #Latino patients. I moderated a @crohnscolitisfdn.bsky.social
webinar w/Latina GIs Dr. Priscila Santiago & Dr. Sandra Quezada who shared insights on #IBD & #EIMs

Watch 👇🏼
🔗 bit.ly/HoraDeComuni...

24.11.2025 15:49 — 👍 1    🔁 0    💬 0    📌 0

Use code: TEAMCHALLENGE for 10% discount

07.11.2025 22:03 — 👍 1    🔁 0    💬 0    📌 0
Video thumbnail

Join the @crohnscolitisfdn.bsky.social & Team Challenge OC on Sat, 12/20 @ the Great Park as we walk OR run the Run for a Claus 5K🎅🏼We're an official charity team so you can register w/a discount & fundraise for #IBD cures💙 Connect with your local OC #IBD community!

REGISTER: bit.ly/RunForAClaus...

07.11.2025 22:03 — 👍 3    🔁 0    💬 1    📌 0

When @congressmin.bsky.social wants to meet w/you, you don't hesitate as it's a chance to use my voice at a time when #healthcare access is at risk.
Insurance coverage isn't just about numbers. It’s about people, like me🙋🏻‍♀️Cuts to insurance subsidies don't just affect budgets-they affect lives😞

27.10.2025 18:30 — 👍 2    🔁 0    💬 0    📌 0
Video thumbnail

The heaviest #IBD symptoms aren’t always visible - #anxiety #fatigue #fear💜 Support & self-care matter👊🏼

Los síntomas más pesados de la #EII no siempre se ven - #ansiedad #cansancio #miedo 💜 El apoyo y el autocuidado importan👊🏼

#HispanicHeritageMonth #MentalHealth
#SaludMental

14.10.2025 14:47 — 👍 1    🔁 0    💬 0    📌 0
Preview
Grupo de Apoyo para Adultos con EII ¿Vives con la EII? ¡No estás solo! Únete al Grupo de Apoyo para Adultos con la EII, una comunidad solidaria para adultos hispanohablantes que enfrentan los desafíos de la EII. Comparte experiencias, a...

Para más información/for more information: bit.ly/3PgXNis

13.10.2025 15:08 — 👍 1    🔁 0    💬 0    📌 0
Video thumbnail

During #HispanicHeritageMonth I want all #Hispanic #Latino #IBD patients to know we offer a Spanish speaking virtual support group. Durante el Mes de la Herencia Hispana, quiero que todos los pacientes hispanohablantes con la #EII sepan que ofrecemos un grupo de apoyo EN ESPAÑOL.

13.10.2025 14:53 — 👍 1    🔁 0    💬 1    📌 0
Video thumbnail

Did you know #IBD doesn't just affect your gut? #Fatigue #Anemia & eye inflammation #Uveitis are extraintestinal manifestations or #ElMs that often go unnoticed. Early recognition can make a difference.

Watch my latest reel 👇🏼 & join the #EIM webinar Tues, 10/7! bit.ly/CommunityHou...

06.10.2025 14:59 — 👍 1    🔁 0    💬 0    📌 0
Video thumbnail

Supporting & celebrating all ostomates today on World Ostomy Day🥳Apoyando y celebrando a todos los ostomizados hoy en el Día Mundial de la Ostomía 🥳 #WorldOstomyDay2025
#WorldOstomyDay #OstomyLife

@uoaa-ostomy.bsky.social
@crohnscolitisfdn.bsky.social

04.10.2025 21:30 — 👍 1    🔁 0    💬 0    📌 0
Video thumbnail

Oct. 1 is National Latino Physician Day! While Latinos make up 19% of the 🇺🇸 population, only 6% of physicians identify as Latino/a 🤔Today, I share a heartfelt letter to all Latino physicians on behalf of the American Board of Internal Medicine(ABIM) @abimcert.bsky.social

Read 🗒️ 👉🏼 bit.ly/3Y9oc7C

01.10.2025 13:56 — 👍 1    🔁 0    💬 0    📌 0