Show me your blue and your strong arm selfie for Dress in Blue Day for colorectal cancer awareness!
#dressinblueday #strongarmselfie #colorectalcancer #familialadenomatouspolyposis #familialpolyposis #ColorectalCancerAwareness
2. Mama had 3 rare diseases. she inherited one from each of her parents & then developed 1 from surgical complications related to FAP that nearly killed her just 3 months after I was born.
In many ways, us sharing the same 2 rare diseases really helped us both in our own coping with having them.
1. Happy Rare Disease Day!
This photo was taken just 14 months before we would lose - far quicker than daddy and I anticipated or were prepared for. But we remind ourselves how blessed we both are to have had her an extra 39 years than what was expected.
FAP Shirt & kid’s book linked in bio
If you’re near Turtle Lake, WI on February 27th, you’ll want to make sure to celebrate Rare Disease Day at the Turtle Lake Public Library to hear a very special reading by Ann of her rare disease book!
🗓️ February 27, 2026
⏰ 10:30am CST
📍 301 Maple Street S, Turtle Lake, WI 54889
Be sure to check out Jenny’s latest article on RareDisease.net about Patient Advocacy: Tips for Communicating with Your Doctor
raredisease.net/living/commu...
I had the honor to chat with Adam with thehandicapablepodcast about what I’ve learned from living with Familial Adenomatous Polyposis and Short Bowel Syndrome as well as the pivotal role community plays with any chronic illness or disability
open.spotify.com/episode/5S5g...
The Medical Foods and Formulas Access Act (H.R. 5684/S. 3304) would require federally regulated private & public insurers to cover medically necessary nutrition products to alleviate cost burden families currently face
Send a letter to your congress members
rarediseases.quorum.us/campaign/154...
I had the honor of sharing my experiences with various medical devices and thoughts about Safe Medical Device Repair with the Safe Repair Project
www.saferepairproject.com/a-patient-pe...
Jenny and Amy share how grief has changed how they view the world, their relationships with their fathers and families in episode 3 of A Daughter’s Love Podcast
📺 Watch: youtu.be/NnwREDg0Eo4
🎙️Podcast platforms: creators.spotify.com/pod/profile/...
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_...
Guess what we did today! 😁
Episode 3 will be coming soon for A Daughter’s Love Podcast!
#cancer #raredisease #alzheimer #podcast #grief #familialadenomatouspolyposis #familialpolyposis
It was great being a guest on The Chronic Truth Podcast and talking about Familial Adenomatous Polyposis and changing the world!
youtu.be/e3ivY0aHql4?...
I cry every time I read this beautifully written piece from my interview with Jessica from rareatives 🥹
rareatives.com/2025/10/01/l...
free ebook with step-by-step guide for cancer patients and financial aid resources
www.evolvvhealth.com/ebook_patien...
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...
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...
"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 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
Things such as chronic bowel problems, past surgeries, or conditions (like adhesions) that cause pressure/blockages in the gut, muscle/nerve issues in the intestine that change how it moves can lead patulous
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.
My latest article about learning how to self-advocate with rare disease is now live on RareDisease.net!
raredisease.net/living/self-...
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...
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. 😆
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?...
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
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
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/...
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
"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
You’re correct that CBT-Chronic pain & myself neither said to push through anything. It’s all in the article but in summary, It focuses on how to safely be able to increase activity w/an MDT & ⬇️ the recovery period needed by not over doing it & also ⬇️ risk of dep/anx, which they both can ⬆️ pain
