As you may know (or maybe don't!) this month of September was Chiari Awareness Month. Now you may be asking, 'okay so what is Chiari?' Chiari, pronounced "kee-AH-ree", is sometimes referred to as Arnold-Chiari Malformation. You may also hear someone being referred to as a "zipperhead", which may mean they had a surgery due to Chiari. According to the Mayo Clinic
, Chiari is "a condition in which brain tissue extends into the spinal canal".
For many Chiari patients, signs and symptoms don't arise until later in life. The cause can differ from person to person, but the most common is due to the size of the skull being too small for the brain. Many times, it is not usually found until an MRI scan is done for any reason. Some signs and symptoms include, but are not limited to, neck pains, balance issues, poor hand coordination, numbness in hands or feet, dizziness, and weakness, or they may have no symptoms at all. It is estimated that 1 in 1,000 people have Chiari, and it can affect anyone, regardless of race or gender. It has been thought that Chiari may be genetic, but there hasn't been enough research to prove so or what genes may be involved.
Although Chiari can deeply effect people's lives, and lead to death in some severe cases of type II of Chiari in infants or children, there has not been nearly enough research done for the malformation. It is often missed or misdiagnosed by doctors as well, as people do not know enough about it. It doesn't necessarily help that ever patient's journey with Chiari is different, making research very hard.
Conquer Chiari is an organization that is working across America to help raise awareness for Chiari. In each September, Chiari Awareness Month, Conquer Chiari hosts a "Walk Across America", where townships across the states host mile-walk fundraisers to help raise awareness for Chiari. On September 15, in Lehigh Valley, Pennsylvania, I was honored to be able to participate in this incredible event. Zoe Beth, owner of ZB Production, has Chiari malformation, so I walked for her with her mom at this event. It was an incredible experience! There was many people there, all showing support for someone they know and love. Besides, the mile long walk, there was a photo booth, face painting, raffles, and so much more. The weather was incredible, and getting to learn more about something I had only heard the name of was incredible!
Conquer Chiari site - https://www.conquerchiari.org/index.html