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.