Today we are sitting down with Matthew Horsnell from TREND Community. TREND Community’s mission is to improve the quality of life for those living with rare and chronic diseases. They utilize technology to leverage social media to understand the disease burden. Let’s dive in!

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This episode was produced and edited by : 

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This episode was sponsored by:

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

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Meet Tori:

Tori is a congenital heart defect survivor and has undergone multiple open-heart surgeries and procedures throughout her life, including a life-changing visit to the ER where she narrowly escaped cardiac arrest and was defibrillated 3 times. Sharing her story of resilience and lessons for living victoriously, Tori is a bestselling author of the book, From Vulnerable to Victorious: Turning Your Chronic Illness Into Your Victory Story. 
Growing up, she was an avid athlete, participating in volleyball, basketball, and track in high school. She went on to play volleyball at Corban University and later joined the track team at George Fox University as a high jumper.
With a heart for others affected by chronic illnesses such as CHD, Tori started a lifestyle blog where she shares lifestyle and chronic illness tips. Part of her mission is to have a “heart that beats for others.”  Tori does this through her blog and chronic illness coaching program, where she coaches CHD warriors on creating a game plan to thrive with CHD and use their experiences for impact and purpose.

 
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Connect with Tori:

Learn more about the book here: https://www.amazon.com/dp/B09J43644Q/

Website: https://www.torijoygeiger.com/

Instagram: https://www.instagram.com/torijoygeiger/

Facebook: https://www.facebook.com/torijoygeiger

Discounted Ebook For RARE Listeners: https://www.torijoygeiger.com/ebookdiscount (Use Code RARE for 100% off the ebook download)

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This episode was produced and edited by : 

___________________________________________

This episode is sponsored by: 

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Your listening experience is extremely important to us with that being said please forgive Kristine's audio track. We apologize and will continue to work to improve your overall experience. Thank you for helping us bridge the gap between rare diseases and the rest of the world.

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Meet Kenzi: 
I had a positive pap in 2016, got a biopsy and found out it was stage 1 cancer. I was told I had HPV 16 and that’s what had caused my cancer. I Had a colposcopy, got it lasered & was good to go. I was supposed to have semi annual paps but didn’t go. I had 5 babies (two after the first diagnosis) and got wrapped up in life and never made Pap smears a priority. I didn’t know it was important.. I didn’t go get a Pap after my last daughter was born.

After four years of not getting a Pap smear, I went in in September 2020..i had a positive pap and dysplasia was found.

they did a colposcopy and biopsy. Staged me at 3b. I did a leep procedure. I went through two rounds of chemo (Carboplatin and paclitaxel) and internal/external radiation. And they took me back very quick to get a total hysterectomy. The next pet scan showed two of my pelvic lymph nodes were being effected.

So I had a second surgery.. I got para-aortic lymph nodes dissection. A week after that surgery I went to the hospital for pain and they found out I had an internal secondary hemorrhage. They did a surgery for packing and vault suturing. I also required a blood transfusion. (I’m anemic anyways) Following that I had surgery for a cuff tear that required a revision. After that I developed cuff cellulitis infection. I was hospitalized with Iv antibiotics. I got my last a pet scan in April 2021 and The surgeries were successful to get rid of the cancer. My scan was clear. I had to go in every 3 months for a check up scan (CT or PET) my husband got out of the military and we moved from California to Michigan to buy our first house. I set up my follow up appointment. It NEVER crossed my mind that the cancer could be back.. I was determined and had plans to live life cancer free. Due to my Covid symptoms they called me and read to me my results. I had a 5.6 cm tumor in my pelvic/abdominal wall cavity. Biopsy came back cancerous. I started chemo right away. They sent me to a surgeon. He took me back for my 6th surgery. Performed Debunking & small bowel resection. Tumor was removed en bloc, with 2 segments of small bowel. The surgeon anticipates 3-5 more surgeries. After that, I had went to the ER for breathing struggles and they had found a nodule on my left lung. I just got a biopsy recently and am waiting for my results. I also go talk to the surgeon next week to discuss more surgeries. In the meantime i have gotten Covid (for the second time) I’ve have had to wear a 24 hour heart rate monitor. I have severe vertigo and was passing out. After hitting my head numerous times, they Diagnosed me with post concussion syndrome. The dr found out why it was happening and diagnosed me with POTS..and I have a vitamin b 12, vitamin d, magnesium and potassium deficiency which I am taking medicine for now. I’m already anemic and have needed multiple blood infusions through the last couple years.

I’m just happy and thankful to be at home right now with my family instead of living in the hospital.

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The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Meet Marie:

Marie Dagenaia-Lewis is a very pridefully disabled art activist, speaker, author and creator of the Chronically Spooky series, a coloring book inspired by Disability & Chronic Illness. On top of running her own business, she is the Content Manager at Diversability and the Social Media Manager at Omnium Circus. She spent almost a decade in the broadcast industry as a primetime television director until she was a victim of ableism. Now, she uses her art and storytelling to dismantle the ableist society.

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Connect with Marie:
Www.instagram.com/r.a.r.e.advoc8

Www.rarebymariedl.threadless.com

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This episode was edited by:
Ruwan Basnayake

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This episode is sponsored by:

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Roxy ( aka Roxanne Channel ) Murray

Is a Multiple Sclerosis Warrior , Blogger, Podcaster , Fashion Stylist and MS Advocate.

She created her podcast @SickandSickening_Podcast
while trying to combat her own depression and isolation to navigate life with a chronic illness as a MS sufferer from a ethnic background .

Sharing real unfiltered stories from chronic , disability and invisible illness warriors to create better representation and a safe space for open conversations especially for black and brown people from around the world.

Her number one goal is to use her voice to demand inclusion and visibility for all. She does this by helping others empower themselves to embrace their mobility aids with style, grace and her hashtag #wearenotinvisible

Based in London
Roxy previously studied
Fashion Design , Styling and Promotion at Middlesex University London and went on to become a fashion stylist .

After being diagnosed with Multiple Sclerosis she could no longer work as a stylist but transferred her knowledge of fashion and styling to help herself and others embrace their disabilities, illnesses empowering others to embrace their mobility aids through her social media accounts .

She now works closely with multiple MS organisations to help create better representation and diversity for all but focusing on the black and queer narratives in hopes to work towards a better more diverse MS community that fully represents the full spectrum and diversity within it and possibly a cure .

Please include any social media handles and/or any direct links you would like us to include in your episode show notes.

@multiplesclerosisfashionista

@sickandsickening_podcast

@sickandsickening

https://youtube.com/channel/UCW01_3SIHVIic0PfiuDN5nQ

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

 Rare Disease Data Trust is a new and innovative patient-centric diagnostic model that accelerates the discovery and diagnosis of lost rare disease patients, through direct collaboration with large provider groups and health systems, and compliant commercial sponsorship of targeted searches. To healthcare data owners, RDDT is a first to market innovative high-value, low-risk data commercialization model, serving the most vulnerable and underserved patient in healthcare – the rare disease patient. To Bio-pharma we are a newly discovered compliant pathway allowing commercially sponsored diagnostic searches against provider-owned electronic patient data. RDDT is the neutral market intermediary that operates within a regulatory safe harbor and can execute these powerful and important searches using world-class Artificial Intelligence and Machine Learning technology. Our mission is to end the rare disease diagnostic odyssey and accelerate the discovery and diagnosis of lost rare disease patients.



This episode was produced and edited by : 

___________________________________________

This episode is sponsored by:

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

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At the age of six months, Dima Hendricks was diagnosed with Sickle Cell Anemia. In the face of adversity, Dima is determined to live a life filled with purpose. As a patient advocate and a Sickle Cell Heath Coach for the CARISMA study. Dima’s mission is to help other sickle cell warriors to live productive lives through the pain. 

The ‘Unleashing Royalty’ author also has an extensive pageant resume. She won the titles of Miss Black Dorchester USA, Miss Black Massachusetts USA, and Mrs. Massachusetts International. 

In 2018, Dima launched the #ThroughThePain brand. The podcast was later launched in 2020. 

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Dima’s Links

www.DimaHendricks.com

Instagram @DimaHendricks

Dima’s Book

Unleashing Royalty: A R.O.Y.A.L Formula to Help You Walk into Queendom with Purpose. 

www.UnleashingRoyalty.com

Available on: 

Amazon https://amzn.to/3IJSi7n

Barnes & Noble https://bit.ly/3MnyLMa

#ThroughThePain

Website: www.ThroughThePain.org

Merch: https://throughthepain.store/collections/all

Linktree: https://linktr.ee/ThroughThePainPodcast

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show