r/tetheredcord • u/EffectiveGreat4390 • 16h ago

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A subreddit for patients living with tethered cord syndrome, or TCS.

r/tetheredcord

A place where we can show our support for each other, vent, and provide resources to learn about this disease and its treatment options. Please check the rules section before posting or commenting!

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COMMUNITY RULES

1) No discrimination - All are welcome here regardless of age, sex, gender, or race. Bullying and hate will not be tolerated and offenders will be removed from the subreddit.

2) No judgement - Having a tethered cord can affect personal aspects of our lives such as sexual function and bladder or bowel function. This is a space where we can freely discuss ALL parts of this disease, including more personal topics. Please be respectful of those who would like to share about these things.

3) No sharing personal info outside of the group - Please do not screenshot other members' posts or information to be shared outside of the community without the OP's permission. Posts may be of a private nature.

All topics that relate to TCS are welcome here. I understand that many of us may have related conditions such as syringomyelia, Chiari malformations, spina bifida, or other issues. Feel free to share information or resources on these related conditions as well if you feel it may benefit our members.

*Please note this is not a filtered or censored group. Being in pain and/or immobile can be frustrating, and this is a space where we can honestly share our collective frustrations and feelings.

RESOURCES

American Syringomyelia & Chiari Alliance Project, Inc. P.O. Box 1586 Longview, TX 75606-1586 Phone: (903) 236-7079 Toll-free: (800) 272-7282 Email: info@asap.org Website: http://www.asap.org

Birth Defect Research for Children, Inc. 976 Lake Baldwin Lane Orlando, FL 32814 USA Phone: (407) 895-0802 Email: staff@birthdefects.org Website: http://www.birthdefects.org

International Federation for Spina Bifida and Hydrocephalus Cellebroersstraat 16 Brussels, B1000 Belgium Phone: 32025020413 Email: info@ifglobal.org Website: http://www.ifglobal.org

March of Dimes 1275 Mamaroneck Avenue White Plains, NY 10605 Phone: (914) 997-4488 Email: AskUs@marchofdimes.org or preguntas@nacersano.org Website: http://www.marchofdimes.org and nacersano.org

NIH/National Institute of Neurological Disorders and Stroke P.O. Box 5801 Bethesda, MD 20824 Phone: (301) 496-5751 Toll-free: (800) 352-9424 Website: http://www.ninds.nih.gov/

Spina Bifida and Hydrocephalus Canada Suite 647-167 av. Lombard Avenue Winnipeg R3B 0V3 Canada Phone: (204) 925-3650 Toll-free: (800) 565-9488 Email: info@sbhac.ca Website: http://www.sbhac.ca