79 episodes

Welcome to the because we are a strong podcast. A podcast inspired by stories of struggle and strength. A place where you can feel safe enough to share every part of your rare story. The good, the bad, the happy, and anything in between. Many times those in the rare disease community feel isolated from the rest of the world. Rare disease comes with its own set of unique challenges, ones that are hard for the outside world to understand. Through our stories, we can bridge the gap between a lack of knowledge and understanding. Your story has the potential to touch and reach those who can relate and who otherwise feel alone. Together through our struggles, we can show our strength.

Because We Are Strong Kristine Hoestermann

    • Health & Fitness
    • 5.0 • 9 Ratings

Welcome to the because we are a strong podcast. A podcast inspired by stories of struggle and strength. A place where you can feel safe enough to share every part of your rare story. The good, the bad, the happy, and anything in between. Many times those in the rare disease community feel isolated from the rest of the world. Rare disease comes with its own set of unique challenges, ones that are hard for the outside world to understand. Through our stories, we can bridge the gap between a lack of knowledge and understanding. Your story has the potential to touch and reach those who can relate and who otherwise feel alone. Together through our struggles, we can show our strength.

    Those RARE. Girls: Thankfully RARE. 2021

    Those RARE. Girls: Thankfully RARE. 2021

    Happy THANKSGIVING peeps! Join us as we go over a year to be grateful for. 

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    Connect with us:

    @findyourrare
    on all your favorite social media channels

    https://www.findyourrare.com
     That's why the BC Schizophrenia Society has launched a brand new podcast, called Look Again, Mental Illness Re-examined. Host Faydra Aldridge talks to doctors, families, and people with lived experience about how to recognize mental illness, and the specific treatments that can help. Check it out. They'll really challenge you to“look again” at what you think you know about mental illness. 
    Support the show (https://www.patron.com/findyourrare)

    • 25 min
    INTERVIEW: Christine Rich & Chronic

    INTERVIEW: Christine Rich & Chronic

    Christine Rich is an award-winning marketing executive, retired spin instructor, speaker, mentor, mama, advocate, and author.
    She is passionate about raising awareness about the intersection of chronic illness and mental health and advocating for better support for patients and physicians.
    She serves on the board of directors of the Northeast Ohio Crohn's & Colitis Foundation, is a support group facilitator and also volunteers on the national Crohn's & Colitis Foundation's Patient Advisory Task Force.


    Imagine the collective power if every person with a chronic illness spoke candidly about how mental and emotional health affects their physical symptoms.
    I was diagnosed with an autoimmune disease at a young age and spent many years trying to hide from and deny the fear, anger, and sadness I felt because of my illness. I recently published a book called "Chronic" about how a serious health scare in my late twenties caused me to reevaluate and change her focus to wellness and self-love rather than illness and fear.
    Through raw and personal stories and insights, I share my journey of living with and befriending my less-than-glamorous, often times invisible, chronic illness called Crohn's disease.
    These insights include:
    How women insist they’re “fine” even when they aren’t.
    Why physicians should consistently discuss mental health with their patients.
    What the power of radical acceptance and self-love can provide.
    Chronic encourages readers to shift their perspective of chronic illness from one of shame or fear to one of acceptance and love. Throughout her book, I give readers reasons to feel empowered and to know they are not alone.

    Connect with Christine:
    Instagram: @christinerich_author
    Website: www.christinemrich.com
    Amazon: https://www.amazon.com/Chronic-Christine-M-Rich/dp/1636764827/ref=sr_1_1?dchild=1&keywords=chronic+christine+rich&qid=1633886322&sr=8-1

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    This Episode is sponsored by:


     That's why the BC Schizophrenia Society has launched a brand new podcast, called Look Again, Mental Illness Re-examined. Host Faydra Aldridge talks to doctors, families, and people with lived experience about how to recognize mental illness, and the specific treatments that can help. Check it out. They'll really challenge you to“look again” at what you think you know about mental illness. 
    Support the show (https://www.patron.com/findyourrare)

    • 37 min
    Those RARE. Girls: T.Co's Story

    Those RARE. Girls: T.Co's Story

    Theresa (aka T.Co) is the marketing coordinator for RARE. Her journey in the RARE. world began in 2017 after an unfortunate accident with a camping chair. She developed a rare condition called Complex Regional Pain Syndrome (CRPS) where her brain misfires pain signals. 


    After extensive physical rehab and finding the right medication, Theresa went into remission. But at the same time, she had developed another rare condition called Gastroparesis. This means she has a partially paralyzed stomach and cannot digest food properly. 


    After two years of numerous hospital admissions and many tests, Theresa’s care team decided the best option was to place a surgical G/J feeding tube so she could alleviate nausea while also getting proper nutrition. Theresa has a very complicated relationship with her tube, but she is grateful for what it does for her body. 


    If you’d like to connect with her, she can be reached on Instagram and Twitter @ReeseLove21 or emailed at tco@findyourrare.com.

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    This Episode is Sponsored by:
     That's why the BC Schizophrenia Society has launched a brand new podcast, called Look Again, Mental Illness Re-examined. Host Faydra Aldridge talks to doctors, families, and people with lived experience about how to recognize mental illness, and the specific treatments that can help. Check it out. They'll really challenge you to“look again” at what you think you know about mental illness. 
    Support the show (https://www.patron.com/findyourrare)

    • 8 min
    INTERVIEW: Leeya Alperin & GLA

    INTERVIEW: Leeya Alperin & GLA

    Hey Peeps! Welcome back to another weekly episode of Because We are Strong!  This week we are talking with Leeya, who was only 15 years old when she started down this rare journey. In her sophomore year, she was diagnosed56 with GLA which changed her and her family's lives forever. Now at just 20 years old, Leeya has found a passion for advocacy. I am always in awe of the young advocates in this rare space and I am so confident in the work they will do to bring the invisible visible.
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    Meet Leeya:
    I am an honest person who at 20 years old has been through a lot in 4 1/2 years. At 15 years old, I went down the path to find out what was wrong. A lot of friends did not understand what I was going through and sometimes still do not.
    Mental struggles are true and I also deal with neuropathic pain on top of the condition.

    Diagnosed with Generalized Lymphatic Anomaly (GLA) at 15 years old during the first semester of sophomore year of high school. Since then, my family and I have been on a crazy but rewarding journey. Rewarding in the fact that we all love advocating and I have found a deep passion in wanting to pursue a career in hospital administration.

    Learned and have gone through many things which have led to some “friends” coming and going. That’s also a learning experience of who you want in your life.

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    Connect with Leeya:
    Instagram - @leeyas.story
    Go to www.lgdalliance.org for further information about patients like me with these complex lymphatic anomalies.

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    This episode is sponsored by :



     That's why the BC Schizophrenia Society has launched a brand new podcast, called Look Again, Mental Illness Re-examined. Host Faydra Aldridge talks to doctors, families, and people with lived experience about how to recognize mental illness, and the specific treatments that can help. Check it out. They'll really challenge you to“look again” at what you think you know about mental illness. 
    Support the show (https://www.patron.com/findyourrare)

    • 29 min
    INTERVIEW: Tri Bourne Olympian & Myositis Warrior

    INTERVIEW: Tri Bourne Olympian & Myositis Warrior

    Hey Peeps! It’s Kristine and I am flying solo! Today we have a very special guest, Olympic volleyball player Tri Bourne! Not only is Tri an elite athlete, he also is a RARE. athlete, having been diagnosed with Dermatomyositis in 2016. This is going to be a great episode, so let’s dive in

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    Tri Bourne is a professional beach volleyball player, former professional indoor player and NCAA Division 1 Men's Volleyball player for the USC Trojans. He has been a part of the United States indoor and beach national teams since 2005. He was born on the Hawaiian island of Oahu, where he grew up. Tri's journey has been truly RARE.  In 2016 the onset of a rare disease came and took Tri out of the game for nearly two years. Determined to make his dreams come true Tri fought back and found himself at the Toyko 2020 Olympics.

    Meet Tri Bourne:
    I’m a beach vball professional. I got an autoimmune disease back in 2017 which kept me out for 2 seasons. I later came back, after making the most of my time off, and made the Olympic team…. Find more information at my website www.tribourne.net

    Learn More about Tri Myositis Journey

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    Connect with Tri:

    FB: tribourne
    IG:@tribourne
    YouTube channel:  Tri Bourne 


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    This episode is sponsored by :

    Consolidoc - www.consolidoc.com 
     That's why the BC Schizophrenia Society has launched a brand new podcast, called Look Again, Mental Illness Re-examined. Host Faydra Aldridge talks to doctors, families, and people with lived experience about how to recognize mental illness, and the specific treatments that can help. Check it out. They'll really challenge you to“look again” at what you think you know about mental illness. 
    Support the show (https://www.patron.com/findyourrare)

    • 1 hr 12 min
    INTERVIEW: Barby Ingles, The Cheerleader of Hope

    INTERVIEW: Barby Ingles, The Cheerleader of Hope

    Meet Barby Ingles:

    I was living my dream. I trained and performed cheerleading, dance and gymnastics starting at age 4 through college. Straight out of college I started my own cheer/dance training company. A year later I was hired by Washington State University as the head spirit program coach. I have been battling chronic pain since 1997. First with Endometriosis which resulted in a full hysterectomy and left oophorectomy. Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), is a progressive neuro-autoimmune condition that affects multiple system in the body and needs to be treated early so that disability does not take over and TMJ. I lost my physical abilities was bed bound for years. Using a wheelchair to get to get out of bed. It took 3 years to get a proper diagnosis and another 4 years to get the proper treatment. I know firsthand how hard it is to continue looking for relief, perfect answers, and then coming up against healthcare professionals who blow you off or do not believe what you are saying could actually be what you’re experiencing. As I search for a cure, I have become my own best advocate and work sharing the information so that others do not have the same life struggles that I have. Even after seeing over 100 healthcare professionals, having major surgeries I didn’t need, complications such as internal bleeding, medication interactions, kidney stones, tumors, severe constipation and so much more – I did not give up or give in! 

    I advocate for all of us challenged with a chronic care condition involving chronic pain as well as their family, caregivers, healthcare professionals and public. One in three people (116 million)  in the United States are affected with a condition that causes pain, so it is bound to affect you or someone you know. But until you feel the pain it is difficult to understand all of the challenges it brings on. Whether physical or mental, pain can and will consume you if you allow it to and only the patient can begin the process of healing! My hope is that my speaking engagements and books will inspire your eventual transformation filled with HOPE and motivation.
    About Ipain:
    iPain Foundations objectives are reached through important educational events, support, resources, and enhancement projects that are funded through private donations and grants. The Power of Pain Foundation (dba: International Pain Foundation) demonstrates its commitment to the chronic pain community by promoting new knowledge in the cause and treatment of chronic pain conditions. The ultimate goal is to provide tools and life skills to chronic pain patients giving them the ability to perform their regular activities in the community and to bolster society’s ability to provide full opportunities and appropriate supports. Supporting education for pain patients, family members, caregivers and medical professionals, we make an important contribution to the overall knowledge and treatment of chronic pain. This allows our foundation to affect the lives of millions of people with chronic pain worldwide. Whether you have pain or are a caregiver, family member or friend of someone diagnosed, we’ll help you face the challenges and life changes of chronic pain, head on.

    Connect With Barby :
    https://ipain.appo
     That's why the BC Schizophrenia Society has launched a brand new podcast, called Look Again, Mental Illness Re-examined. Host Faydra Aldridge talks to doctors, families, and people with lived experience about how to recognize mental illness, and the specific treatments that can help. Check it out. They'll really challenge you to“look again” at what you think you know about mental illness. 
    Support the show (https://www.patron.com/findyourrare)

    • 58 min

Customer Reviews

5.0 out of 5
9 Ratings

9 Ratings

Chad11988 ,

Rare ❤️♿️🔥

As a man that has chatted with Rare founders. I found myself in a happy place. See we aren’t able bodied, disabled, white, black, Christian, Muslim. We are a human being. All of us. That’s what the founders and total strangers have showed me. I couldn’t be more thrilled for this great group of people.

Brooke Norton ,

A must listen!

This podcast is a MUST for anyone! The hosts give space for people on rare medical journeys to share their stories. It doesn’t matter who you are, these stories need to be heard. Awareness is the first step towards real change in our world!

Jazziedanielle ,

Love!!!

Love these ladies and RARE. Always so positive and real! Genuine conversations ♥️

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