Latest Breaking News On - Rare disease week - Page 5 : comparemela.com

Marley s family shares story during Rare Disease Week to raise awareness and last updated 2021-02-23 06:05:30-05 GRAND RAPIDS, Mich. — Tuesday marks the start of Rare Disease Week, recognizing the nearly 30 million people in the U.S. who are affected by a rare disease. Marley Berthoud of West Michigan was diagnosed with Bachmann Bupp syndrome. She was the very first human to be given that diagnosis, and since then there are now a few more people worldwide who have been given that diagnosis.​ Her mother Kelly had a normal pregnancy, but when Marley was born there were a lot of neurologic deficits that led doctors to take an MRI at her birth. That’s when they found a massive brain hemorrhage. After a year and a half, the family had been to multiple doctor appointments trying to find answers when they finally sought out a genetics consult.

Michigan state universityUnited statesGrand rapidsMarley berthoudBachmann buppRare disease week calvin universitySpectrum health helen devos children hospitalRare disease weekWest michiganBachmann bupp syndromeSpectrum health helen devos childrenFox 17Helen devosNational rare disease weekRaising awarenessRare diseases