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Mar 30, 2021

Our guest this week is Shannon Wyatt.  Shannon has an extremely rare condition called von Hippel-Lindau Chuvash Polycythemia (we will abbreviate to VHL).  Her only symptom that led to finding VHL was that she was diagnosed with kidney cancer at 34 years old, that didn’t even have any noticeable symptoms, it was just...


Mar 23, 2021

 

Bleeding Disorders, also known as Hemophilia, von Willebrand Disease, Coagulation Disorders, Blood Clotting Disorders, Clotting Factor Deficiencies

Bleeding disorders are rare disorders affecting the way the body controls blood clotting. If your blood does not clot normally, you may experience problems with...


Mar 16, 2021

Trisomy is an abnormality in which an organism has the wrong number of chromosomes. In humans, a normal baby will have 46 chromosomes in 23 pairs, with each parent contributing 23 chromosomes. When trisomy occurs, the individual is born with three instances of a particular chromosome instead of the usual two, resulting...


Mar 9, 2021

Lauren, is here speaking with us today about Lysosomal Storage Disease.  Lauren has four siblings whom she loves dearly, and graduated in 2011.  She worked at a community center until COVID put a hold on social gatherings. She considers herself a social person and is grateful for the chance to get her story out into the...


Mar 2, 2021

This week we are speaking with a Muscular Dystrophy Warrior!  

Keisha Greaves

Keisha Greaves is a motivational speaker, the founder of Girls Chronically Rock, and the Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA). Girls Chronically Rock (www. girlschronicallyrock.com) offers inspired fashion celebrating...