Judy Sarssam’s story of her own diagnosis with Refsum disease

Please share this video to raise awareness and enable early diagnosis of Refsum disease!

EETN Chair Judy Sarssam explains in her own words how she was diagnosed with Retinitis Pigmentosa aged 18 and 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.

Join the Global DARE Foundation in making a difference for the Refsum community.

To learn more about Global DARE Foundation visit their website at https://www.defeatadultrefsumeverywhere.org/

If you have any questions please contact Global DARE Foundation at info@globaldare.org