Refsum Disease - Susie's story

Learn how Susie had textbook symptoms of Refsum at a very early age but wasn't diagnosed until she was 43. It took her collapsing and being admitted to the hospital before she received a diagnosis. She had over 10 hospitalization as a result. Did you know that one in 300 people who have Retinitis Pigmentosa also have Refsum disease? As Susie 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. Visit our website at www.defeatadultrefsumeverywhere.org/. Please share this video to raise awareness and enable early diagnosis! #darefest #curerefsum #retinitispigmentosa #lowvision If you have any questions please contact Global DARE Foundation at [email protected]

• #nonprofits_activism
• #adult_refsum_disease
• #refsum_disease
• #retinitis_pigementosa
• #phytanic_acid