Life’s a Polyp
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lifesapolyp.bsky.social
Life’s a Polyp
@lifesapolyp.bsky.social
200 followers 520 following 100 posts
Rare Disease Advocate: Familial Adenomatous Polyposis & Short Bowel Syndrome
Children’s Book Author
Posts Replies Media Videos
lifesapolyp.bsky.social
The Infusion Access Foundation is doing research to better understand needle fear and phobia.
It’s a quick survey and your participation is greatly appreciated!

Research Link: uwrf.co1.qualtrics.com/jfe/form/SV_...
November 15, 2025 at 1:00 AM
lifesapolyp.bsky.social
Guess what we did today! 😁
Episode 3 will be coming soon for A Daughter’s Love Podcast!
#cancer #raredisease #alzheimer #podcast #grief #familialadenomatouspolyposis #familialpolyposis
November 9, 2025 at 10:02 PM
lifesapolyp.bsky.social
It was great being a guest on The Chronic Truth Podcast and talking about Familial Adenomatous Polyposis and changing the world!

youtu.be/e3ivY0aHql4?...
Why Genetic Testing Can't Wait Until Age 16 - Familial Adenomatous Polyposis (FAP) | Jenny Jones
YouTube video by The Chronic Truth Podcast
youtu.be
November 4, 2025 at 11:43 PM
lifesapolyp.bsky.social
I cry every time I read this beautifully written piece from my interview with Jessica from rareatives 🥹

rareatives.com/2025/10/01/l...
Life’s a Polyp: Jenny’s Journey from FAP Patient to Advocate
Individuals with rare diseases and chronic illnesses have significant rates of medical PTSD. Jenny Jones’ experience with FAP and SBS led her to develop medical PTSD. Now, as an advocate and …
rareatives.com
November 2, 2025 at 9:34 PM
lifesapolyp.bsky.social
free ebook with step-by-step guide for cancer patients and financial aid resources

www.evolvvhealth.com/ebook_patien...
Evolvv Health | Cancer Coaching & Support
Evolvv Health helps newly diagnosed cancer patients and caregivers navigate treatment decisions, access financial aid and practical resources, and find calm, compassionate coaching—so you feel support...
www.evolvvhealth.com
October 25, 2025 at 11:57 PM
lifesapolyp.bsky.social
Research Fundraiser ends TONIGHT 10/25 11:59 pm PST! 3 sales away from being able to donate proceeds to FAP & Alzheimer’s Research. Get yours now: spreadgoodshop.com/products/fie...
October 25, 2025 at 6:34 PM
lifesapolyp.bsky.social
Spread Good Shop was kind enough to extend the sale until 10/25!
We need 7 more orders for donationable proceeds to be available for research for Familial Adenomatous Polyposis & Alzheimer’s in honor of our mamas. We’d love your help to do so!
spreadgoodshop.com/products/fie...
Fierce Mama
Proceeds from this merch benefit NORD Familial Adenomatous Polyposis Research Fund and Cure Alzheimer's Fund in honor of Jenny and Amy's mothers.Jenny and Amy share the life and chronic illness storie...
spreadgoodshop.com
October 20, 2025 at 9:13 PM
Reposted by Life’s a Polyp
achronicvoice.com
"Jenny and Amy share their #grief #experiences over the last year after losing their #mothers as well as the lessons they've gleamed from grief.": buff.ly/GC7owCf

via @lifesapolyp.bsky.social
#LifeLessons #loss
Our Lessons in Grief
Jenny and Amy share their grief experiences over the last year after losing their mothers as well as the lessons they've gleamed from grief. Get your Fierce Mama shirt, hoodie, or tote before 10/18…
buff.ly
October 13, 2025 at 7:30 PM
lifesapolyp.bsky.social
Our Lessons in Grief is available now to listen or watch!
In it we share our grief experiences over the last year after losing our mamas as well as the lessons we’ve gleamed from grief.

🎙️Podcast platforms: creators.spotify.com/pod/profile/...
🎥 YouTube: youtu.be/XLFQ40bL73A
A Daughter’s Love Podcast • A podcast on Spotify for Creators
Jenny (Life’s a Polyp) and Amy share the life and cancer stories of their mothers as well as their own experiences, memories, and grief of losing their mothers less than a month apart. Jenny and Amy ...
creators.spotify.com
October 11, 2025 at 8:07 PM
lifesapolyp.bsky.social
The final radiologist diagnosed me w/chronic patulous small bowel: there’s a segment stretched wider than normal. It can cause diarrhea, pain, bloating, malabsorption.
October 6, 2025 at 2:17 AM
lifesapolyp.bsky.social
My latest article about learning how to self-advocate with rare disease is now live on RareDisease.net!

raredisease.net/living/self-...
Living With a Rare Disease: Learning Self-advocacy
Practical tips for developing self-advocacy skills
raredisease.net
October 5, 2025 at 1:31 AM
lifesapolyp.bsky.social
We’ve been working w/Spread Good Shop & are excited to announce a limited time merch fundraiser in honor of our mamas & A Daughter’s Love Podcast. Proceeds donated to NORD FAP Research Fund & Cure Alzheimer’s Fund. It’s 3 items in 5 different colors each
spreadgoodshop.com/products/fie...
Fierce Mama
Proceeds from this merch benefit NORD Familial Adenomatous Polyposis Research Fund and Cure Alzheimer's Fund in honor of Jenny and Amy's mothers.Jenny and Amy share the life and chronic illness storie...
spreadgoodshop.com
October 4, 2025 at 3:47 PM
lifesapolyp.bsky.social
Small bowel follow through day
I downed the first bottle in under a minute. My tech says “oh….wow, most people sip on it”. I explain, it’s one of the better tasting things I have to drink for tests 😂
” it can take up to 4 hours for the test “. My transit is 1.5 hours so we should be pretty quick. 😆
October 1, 2025 at 2:52 PM
lifesapolyp.bsky.social
Listen now to the first TyePod Panel where myself and other chronic illness advocates share the how we find support in podcasts and navigating difficult days.

youtu.be/QuABYwqga-c?...
The TyePod Panel 1
YouTube video by Tye Martin
youtu.be
October 1, 2025 at 2:31 AM
lifesapolyp.bsky.social
OMG yall! It’s a kids book about DNA and $1 from every sale is donated to hereditary cancer advocacy. 😍😍

Go to www.MendelCat.com
Paperback ISBN 979-8-218-77999-3
Hardbound: ISBN 979-8-218-79986-1
Yay Yay DNA with Mendel G. Cat
Yay Yay DNA! Do You Wonder What Makes You You? With Mendel G. Cat. A story book about deoxyribonucleic acid for young readers. Art and words by Mark A. Hicks
www.MendelCat.com
September 26, 2025 at 10:44 PM
lifesapolyp.bsky.social
Don’t miss out on Part Two about Common Genetic Cancers by Krishnan Family Foundation

Commonly Seen Predisposition Syndromes
Sept 24th
8pm ET

Register:? qrfy.io/74q7vibjfk
Welcome! You are invited to join a webinar: Webinar 2: Commonly Seen Predisposition Syndromes. After registering, you will receive a confirmation email about joining the webinar.
This free, 3-part webinar series empowers parents and young adults with knowledge about inherited cancer risk, common genetic syndromes like Lynch Syndrome, Li Fraumeni Syndrome. CMMRD, and when to co...
qrfy.io
September 22, 2025 at 4:58 AM
lifesapolyp.bsky.social
Super excited to share that my cousin & I officially launched our podcast where we share our mama’s stories with cancer and Alzheimer’s or rare disease as well as our grief journey of losing them three weeks apart

www.YouTube.com/LifesaPolyp

creators.spotify.com/pod/profile/...
Life's a Polyp
Life's a Polyp explores life with two rare diseases - Familial Adenomatous Polyposis and Short Bowel Syndrome. It is also where A Daughter's Love Podcast is housed. In it, Jenny and Amy heal grief thr...
www.YouTube.com
September 7, 2025 at 1:07 AM
lifesapolyp.bsky.social
A Daughter’s Love Podcast is LIVE on Podcast platforms NOW and will go live on YouTube Saturday! We’re so excited for you to listen/watch 
🔗 creators.spotify.com/pod/profile/...
🔗www.YouTube.com/LifesaPolyp
A Daughter’s Love Podcast • A podcast on Spotify for Creators
Jenny (Life’s a Polyp) and Amy share the life and cancer stories of their mothers as well as their own experiences, memories, and grief of losing their mothers less than a month apart. Jenny and Amy ...
creators.spotify.com
September 4, 2025 at 1:53 AM
Reposted by Life’s a Polyp
achronicvoice.com
"due to the ongoing condition of #ChronicPain, the #pain ..no longer is a reliable warning that harm is occurring. Rather than withdrawing from activity in #fear ..it is to our benefit to engage..with #pacing practices in place.": buff.ly/N74cFNV

by @lifesapolyp.bsky.social
#spoonie #CBT
Cognitive Behavioral Therapy for Chronic Pain
Understanding CBT as a Tool in Chronic Pain Management
buff.ly
August 31, 2025 at 7:30 AM
lifesapolyp.bsky.social
We had a great time recording our 1st episode of A Daughter’s Love Podcast!
Between recording, catching up, & lunch, we even made a couple TikToks!😆
Episodes will be available on podcast platform & YouTube 
Be sure to subscribe to
www.youtube.com/lifesapolyp 
TikTok: www.TikTok.com/@lifesapolyp
August 30, 2025 at 10:20 PM
lifesapolyp.bsky.social
In-Person/Virtual the Rare Disease Caucus Briefing about Regulatory Urgency & Therapeutic Opportunity for Rare Disease.

🗓️ Thursday, September 11
⏰2:00 p.m. - 3:00 p.m. ET

🏛️House Rayburn 2060, Washington, D.C. & livestream

💻Register
everylifefoundation.org/rare-advocat...
August 27, 2025 at 11:26 PM
lifesapolyp.bsky.social
In my latest YouTube video, I share what I learned for Rehabilitation and Recovery from Brain Injuries

youtu.be/UFIg0Wlf2M0
Rehab and Recovery for Brain Injury
YouTube video by Life's a Polyp
youtu.be
August 16, 2025 at 2:16 PM
lifesapolyp.bsky.social
NORD’s virtual community conversation:

Navigating School and Beyond: Advocacy Tips for Rare Youth and Young Adults.

Date: Thursday, August 21, 2025
Time: 6-7 p.m. ET

Register:

rarediseases.acemlna.com/lt.php?x=3DZ...
Welcome! You are invited to join a meeting: Navigating School and Beyond: Advocacy Tips for Rare Youth and Young Adults. After registering, you will receive a confirmation email about joining the meet...
Being a teen or young adult with a rare disease isn’t easy—especially when it comes to speaking up for yourself. But your voice is powerful, and this webinar is all about helping you use it with confi...
rarediseases.acemlna.com
August 14, 2025 at 5:58 PM
lifesapolyp.bsky.social
UTDN & Your Gay Lawyer partnered to share the 9 documents needed to create a domestic partnership to provide the same protections of marriage
If you’re not aware of what you need to protect your wishes & relationship, watch UTDN’s linked video
Live in Love & Love to All ♥️🌈

youtu.be/hOhIHdmnBM0?...
How To Save Gay Marriage
YouTube video by Under The Desk News
youtu.be
August 12, 2025 at 9:30 PM
Reposted by Life’s a Polyp
achronicvoice.com
CW: #Death
.
"That was when we knew there was no more hope of saving her. The only thing left I could do as a #caregiver was make her last days as comfortable and full of love as I possibly could.": buff.ly/blN9jLQ

by @lifesapolyp.bsky.social
#family #ChronicPain #spoonies
Caregiving for Mom - The Last Years
Reflections on My Caregiver Role for Mama
buff.ly
August 3, 2025 at 4:30 PM