What is ChiariSupport.org?
ChiariSupport.org is a dedicated patient-to-patient support community for families affected by Chiari Malformation. ChiariSupport.org is powered by BensFriends.org, patient support communities for rare diseases, and is run by volunteer moderators who have been affected with Chiari Malformation.
Who can join ChiariSupport.org?
If your family has been affected by Chiari Malformation, consider ChiariSupport.org your second home. ChiariSupport.org, as well as the rest of BensFriends.org’s patient communities, is free for members to join.
What is Chiari Malformation?
Chiari malformation, is usually present at birth and occurs at the back of the head where the brain and spinal cord connect.
There are four types of Chiari malformations:
Type 1 – occurs when the base of the skull and upper spinal area do not form properly. A type 1 Chiari malformation commonly goes unnoticed until problems arise in the adolescent or adult years of life. The headaches most typical of Chiari I malformations are usually located at the back of the head, and are often made worse by exertion.
Type 2 – sometimes known as an Arnold-Chiari malformation, a type 2 Chiari malformation is caused by part of the back of the brain shifting downward through the bottom of the skull. it is seen in infants who are born with spina bifida and can also be associated with hydrocephalus, a condition in which there is an overproduction or lack of absorption of the cerebral spinal fluid (CSF).
Type 3 – occurs when the back of the brain protrudes out of an opening in the back of the skull area.
Type 4 – occur when the back of the brain fails to develop normally.
Children with Chiari I malformations may start to have symptoms as early as age 2 or 3. Some don’t have any symptoms until they are older. Symptoms can appear any time. They may start or get worse after a trauma, physical effort or straining, such as exercising, coughing or sneezing.
Syringomyelia, common with Chiari, is a cyst in the center of the spinal cord that is filled with fluid. The cyst, also called a syrinx, can get larger and longer over time, putting pressure on the spinal cord and causing symptoms. If not treated, it may also eventually cause nerve damage.
In 2007, Ben Muñoz suffered a rare form of stroke caused by an AVM. He was unable to find the support he needed during the most difficult time, so he created an online support community AVMSurvivors.org to connect with others like him. AVMSurvivors.org led to the founding of BensFriends.org, driven to provide patient-to-patient support communities for people living with rare diseases.
BensFriends.org is a network of patient communities for people living with rare diseases. Launched in November 2007, BensFriends.org provides valuable patient support by creating and running compassionate, responsive communities. BensFriends.org maintains dozens of patient communities and has changed thousands of lives.
You can learn more about BensFriends.org at http://www.bensfriends.org or watch one of our videos at http://www.youtube.com/BensFriendsVideos