Welcome! You're not alone.
If your family has been affected by Chiari, consider Chiari Support your second home.
Read More from our First-Time-User Guide
"To Know the Joy of Giving"
First take a deep breath, then call the National Suicide Prevention Hotline immediately. 1-800-273-TALK
for members in the United States, or for international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.
All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.
BensFriends.org helps 80,000+ rare disease patients every month but until the IRS grants us 501c3 status, we can’t raise money from foundations and corporations. It costs about $2,000 a month to run the 30+ communities. In order to sustain our monthly operating costs, we called for members' donation campaign. Would you help us keep the miracle going at Ben's Friends? If you can, please visit our Donate page on this link.
Arnold–Chiari Malformation, or often simply known as Chiari Malformation, is a malformation of the brain. Chiari malformation consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull), sometimes causing non-communicating hydrocephalus as a result of obstruction of cerebrospinal fluid (CSF) outflow. The cerebrospinal fluid outflow is caused by phase difference in outflow and influx of blood in the vasculature of the brain. Person with Chiari Malformation often experienced headaches, fatigue, muscle weakness in the head and face, difficulty swallowing, dizziness, nausea, impaired coordination, and, in severe cases, paralysis.
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This is a super long post, but I'm at my wit's end with these community clinics - does anyone have any advice for getting effective treatment when you can't afford health insurance but you don't qualify for Medicaid?I don't qualify for Medicaid in…Continue
Hi Everyone,How are you all honestly? I just want to check on everyone.I have been very busy and sick over the past few months.I am sorry if I haven't been asfast to return a message but am trying my best. I have a lot in the works as usual.…Continue
To all of us that have run the medical gauntlet.Am I being too idealistic to think that if we had some type of pre appointment information to give our primary care and NS doctors to show them the difficulties we face, that it may help them…Continue
I thought it might be cool to see what everyone's symptoms are. I know this could turn into a long discussion, as everyone probably has the same lengthy list as I do! LoL!Here goes, I'll start at the top of my head and work my way…Continue
We’re so proud to announce the release of the Ben’s Friends iPhone App!!!
Go to the App Store and download it now. To help others locate the app easier and enjoy online support, don't forget to give the app a 5-star rate review. Strong reviews like 5-star help bumps up Ben's Friends in the Apple's search result.
In the App, you can access all 35 support communities through the site and it’s perfect for staying in touch with your friends, info and support while on the go. In our beta tests, patient reported using it in doctor office waiting rooms and right after they were given a new diagnosis. The next feature in the App will be portable doctor reviews!
The first run of our podcast on genetic disorders with our partner, RareGenomics, was a resounding success! You can listen to a recording of this podcast below, plus some bonus material from Dr. Perlman as she answers more questions about ataxia!
Thanks for your cooperation.
Welcome to ChiariSupport.org. We're glad you found our Community site. The purpose of this community is for people affected by a Chiari Malformation (types I-IV) to provide each other with emotional support. We are patients helping patients. We also have some parents/family members of those who suffer from Chiari Malformation.
What can you do on ChiariSupport.org?
1. Share your story on "My Page".
2. Start a new discussion on "Forum" and "Discussions".
3. Welcome new members with a comment on their page Welcoming Them To the group.
4. Share your photos/videos that inspire you or help you cope with living with Chiari Malformation.
5. Comment on other discussions and get to know your fellow members, make friends and get the support that WE ALL need.
Posted by TexasMom1977 on July 2, 2013
Posted by Karla on December 2, 2013
Posted by joker12090 on November 29, 2013
Posted by dazybigred on December 2, 2013
Posted by stillhappy on December 6, 2013
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Best of Ben's Friends is a collection of inspirational or informative posts from across our family of patient communities. To nominate a post, discussion, photo, or video, email the link to firstname.lastname@example.org.