Petition Closed

 

Dear friend affected by Chiario no:

We get in touch with you to make you a proposal: Many Chiari affected different countries consider it important to create an international day of our disease and related diseases to meet the following objectives:

- To show the Chiari social level through the media that would echo that day, which will help the affected us feel more understood by friends, neighbors and coworkers.

- To impart information to train the patients and their families to recognize symptoms. For example sleep apnea: many affected children may have sudden death and that the mothers of those affected would not know but receive information.

- To raise awareness among primary care physicians and pediatricians to become informed and learn how to diagnose it.

The United States welcomes the September 16 International Day of Chiari how. Propose also set national days of the disease. Each country could choose its own.

Please HELP US AND SIGN HERE http://www.change.org/es/peticiones/chiari-y-siringomielia

 

We also believe important to form an International Federation of Chiari in order that all countries enjoy the same information and can meet any advance or research carried on Chiari and its related pathology.

The task at hand is arduous and difficult but to get something positive is the best way to organize and provide ideas for the sole purpose of helping those who suffer, to avoid delay in diagnosis and ensure that there are centers for conducting the necessary tests such as RSM, CT, X-ray, laboratory, sleep studies and evoked potentials before deciding whether the solution is surgery.

We ask all your help and I encourage you to form part of existing partnerships or the like believe that they can join the Federation.

We thank you all and we send a message of hope and lots of encouragement to keep going.

Letter to
All those affected by Chiari and syringomyelia




We again request CHIARI international day of Chiari
The Chiari malformation is a rare neurological disease that is a structural defects in the cerebellum may develop when the bony space is smaller than normal, causing the cerebellum and brainstem are pushed downward into the foramen magnum and spinal canal higher. The resulting pressure on the cerebellum and brainstem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF). When treatment is surgical progressive symptoms.
The victims wish to join the world to ask the World Health Organization to create the international day of Chiari. We believe it would help us to raise awareness of this disease in the social and medical.
The only way to diagnose this disease is with an MRI. Those affected are slow to be diagnosed because many GPs are unaware of this condition and do not derive specialists. This disease can cause disability and disability. It affects children and adults. We have lost many friends along the way affected by this disease and it is sad very sad.
We ask that you enter on this link and We beg you to send this message to your contacts to get much support.Please be not of those who remain idly
Marta Gamboa