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Group Description

We are people affected by adult Refsum Disease, sharing our experiences, coping strategies, dietary tips, etc. with Refsum patients, their families, caregivers, significant others and friends. The purpose of our group is to support, inform, advise and encourage one another as we face the many challenges of living with a rare metabolic disorder.



Although the group communicates mainly in English, language should not be a barrier to joining. Members are welcome to post messages in their native tongue as many of us are multi-lingual. Access to translation programs is provided via the Link section in the navigation tool under the Translation Tools directory. Members are invited to regularly check the Files and Links sections for more information on the disorder and related topics.



*** DISEASE DESCRIPTION ***

Refsum Disease is a recessive genetic disorder and is characterized by retinitis pigmentosa, anosmia, peripheral neuropathy, hearing loss and less commonly, congenital abnormalities. The symptoms result from an accumulation in the body of phytanic acid which cannot be metabolized. A diet low in phytanic acid is therefore recommended and is considered the most important management for the majority of patients.



** Disclaimer **

As this group is not moderated the list owner cannot accept any responsibility for message content.

Any views posted in this forum are the opinions of the individual
writer and are not intended to take the place of either advice or diagnosis from your professional care givers.

Group Information

Group Settings

  • This is a restricted group.
  • Attachments are permitted.
  • Members cannot hide email address.
  • Listed in Yahoo Groups directory.
  • Membership requires approval.
  • Messages are not moderated.
  • All members can post messages.

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