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  • Episode 8: Michelle has the Tea on the COVID vaccine and Plasma

    Episode 8: Michelle has the Tea on the COVID vaccine and Plasma
    2021/12/10

    Michelle Barrett is an advocate for the CVID (Common Variable Immunodeficiency) support groups that our host Megan attends.  Michelle has some information on the vaccines, and what it does to the plasma-derived medication they receive every three weeks.  If you are in the rare disease community  and you receive infusions you won’t want to miss this bit of information…“The Tea”

    #raredisease #invisibleme #podcast #CVID
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    37 分
  • Episode 7: Storms and Rainbows Ft. Kelly Cherry

    Episode 7: Storms and Rainbows Ft. Kelly Cherry
    2021/12/03

    Our Guest Kelly Cherry discovers that she has a rare autoimmune condition while trying to have a family.  She weathers the storm and finds her rainbow babies.

     

    #raredisease #invisibleme #podcast #autoimmune
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    21 分
  • Episode 6: I Refuse to break, The Justin Martinez Story

    Episode 6: I Refuse to break, The Justin Martinez Story
    2021/11/18
    Yolk Sac or Germ Cell Tumor is a rare malignant tumour of cells that line the yolk sac of the embryo.  These cells normally become ovaries or testes; however, the cause of the yolk sac tumour is unknown.  It is most often found in children before the ages of 2 but can occur throughout life.  The Term yolk sac tumours encompass many types of tumours including germ cell tumours.  These tumours can occur in the chest, brain, and other parts of the body.     Justin shares his experience with a germ cell tumour that was found in his chest. He shares his life’s motto and I hope it will inspire all of you.     #germcelltumor #YolkSac #raredisease #invisibleme #podcast 
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    39 分
  • Episode 5: Ehlers-Danlos Syndrome, Nthabeleng Ramoeli story

    Episode 5: Ehlers-Danlos Syndrome, Nthabeleng Ramoeli story
    2021/11/12

    Ehlers-Danlos Syndrome is a genetic connective tissue disorder.  Symptoms may be noticeable as early as after birth or during early childhood.  These disorders usually occur due to a gene mutation resulting in defects in the processing or structure of collagen.  Our friend Nthabeleng Ramoeli, CEO of RARE Disease Lesotho association from Africa joins us to share her story with EDS.  

    https://www.facebook.com/RDLAngo/

    #raredisease #Ehlers-DanlosSyndrome #invisibleme #podcast
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    27 分
  • Episode 4: One Team one Fight, The Melvin William‘s story

    Episode 4: One Team one Fight, The Melvin William‘s story
    2021/11/06
    Melvin Williams is a Lymphoma Survivor, fitness coach and mentor to so many. Melvin served 15 years in USMC/communication, supply and 11 years in USAR water purification. He shares his story with us and inspires us to push forward.   #raredisease #lymphoma
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    55 分
  • Episode 3: Jenny Jones Life’s a Polyp

    Episode 3: Jenny Jones Life’s a Polyp
    2021/10/28

    Jenny's story begins around 8 years old; she is diagnosed with Familial Adenomatous Polyposis.  (FAP) is hereditary.  Jenny shares her family history with FAP and she helps us understand what she has done to normalize her lifestyle.  Jenny is a warrior and dedicates herself to raising awareness with FAP.  follow jenny on her Youtube channel Youtube.com/lifesapolyp   

    www.Youtube.com/LifesaPolyp

    www.CafePress.com/LifesaPolyp
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    39 分
  • Episode 2: Megan‘s Story

    Episode 2: Megan‘s Story
    2021/10/21

    Megan’s is our other warrior sister who also does a self-story for us.  Megan also receives lifesaving plasma for CVID (common variable immunodeficiency) and shares her struggles with her condition.  She shares the importance of having a good relationship with doctors and helps empower the listeners to always push forward.  We hope you enjoy the show.

    #raredisease #podcast #immunecompromised #podcast
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    12 分
  • Episode 1: Allie‘s Story, Invisibe Me

    Episode 1: Allie‘s Story, Invisibe Me
    2021/10/15

    Allie is our warrior sister and she recorded a self-story for us.  Join us as She takes us through her journey as a rare disease warrior. Allie starts when she was a child and shares her personal struggles, her loneliness, and how her mother helped her cope with this illness.   Allie receives life-saving plasma every three weeks, but she also struggles with Lyme disease.  We hope you enjoy the show.

    Listen to the full episode on: www.invisibleme.us

    #raredisease #invisibleme #lymedisease #lymes #plasma #bloodplasma #plasmadonation #podcast
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    33 分