Tinnitus
Do you hear a constant sound in your ears, even though there is no external source linked to the noise? If so, you're likely suffering from tinnitus, and you aren't alone. It's estimated that more tha...
6 Huhti 202119min
von Hippel-Lindau Chuvash Polycythemia
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 ...
30 Maalis 202143min
Bleeding Disorders
Bleeding Disorders, also known as Hemophilia, von Willebrand Disease, Coagulation Disorders, Blood Clotting Disorders, Clotting Factor Deficiencies Bleeding disorders are rare disorders affecting the...
23 Maalis 20219min
Trisomy
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 tr...
16 Maalis 202112min
Lysosomal Storage Disease
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...
9 Maalis 202124min
Muscular Dystrophy
This week we are speaking with a Muscular Dystrophy Warrior! Keisha Greaves is a motivational speaker, the founder of Girls Chronically Rock, and the Massachusetts State Ambassador for the Muscular...
2 Maalis 202129min
Rare Disease CAMK-2 Gene
Our guest today is Karen is a wife and mother to 5 children. Her youngest, who is now 13 was born seemingly healthy. In her first weeks it became clear that she wasn't developing normally. After 10 ...
23 Helmi 202127min
Effects of Agent Orange
Tara Parham, the daughter of a disabled USMCS Veteran, eighty-sixed her 6 figure income career in Government Healthcare and Lean Six Sigma, after falling ill with the first of 3 rare diseases that ar...
16 Helmi 202153min
