Cara Yar Khan

My Personal Story
By: Cara Yar Khan, 31, Beijing
HIBM patient since 2002
United Nations Private Sector Specialist

“We should consider every day lost on which we have not danced at least once.”

“The journey of HIBM has been frightening – not only for myself, but for my family and friends as well. Ignorance was torturous; not knowing what was happening to my body or why or how things would develop was anxiety-provoking, and when we finally got some answers, we were unprepared to handle the extent of disability that lay ahead.

Nevertheless, the past five years have made me feel closer to those around me who I need to depend upon. It has brought out my innermost strength and tested my determination, faith and courage. Today I am happier than ever before because I know myself and what is most important to me. I have the opportunity to make a real difference.

Meeting other patients has changed my life. Their courage, knowledge and support have been invaluable. I am forever grateful for their honesty and insight.

ARM provides opportunities for patients to ask questions, share stories and learn from others who understand living with such a powerful disease. Connecting with patients through ARM's HIBM web forum has been an inspiring experience. Through ARM we can raise awareness and mobilize resources for this rare disease.

I am living my dream of working for the United Nations! It is my hope that I can help in some way to send out ARM’s message to the leaders of the medical and political communities. Through the strength of ARM’s message, these leaders will be inspired to use their resources to help develop a cure for HIBM. My purpose is to show others that despite having HIBM, I am living my dreams and that I have much to celebrate! I know the power of a smile, a soft touch, a kind word and saying thank you. No one should ever feel sorry for me because I know everything will be OK!”