Judy Sarssam, the Chair of Epsom and Ewell Talking Newspaper, tells the story of her own diagnosis with Refsum disease.
EETN Chair Judy Sarssam explains in her own words how she was diagnosed with Retinitis Pigmentosa aged 18, but then wasn’t diagnosed with Refsum until 32 years later at age 50. One in 300 people who have Retinitis Pigmentosa also have Refsum disease.
As Judy learned, early diagnosis could have improved her quality of life. Dietary therapy can slow sight and hearing loss associated with Refsum and lessen other symptoms.
The Global DARE Foundation promotes world-wide awareness and better quality of life for all who are diagnosed with Adult Refsum Disease. To learn more, visit their website or contact Global DARE Foundation at .
