Ibadullah Khan

Type of Porphyria

Congenital Erythropoietic Porphyria (CEP)

Hello Porphyria family members, I hope you are doing well. I am sharing my brief story with you. I hope you will enjoy it.

I am Ibadullah Khan from the northern part of Pakistan called the Hunza Valley. I was born in December 1992 in Hunza Valley, nestled in the northern regions of Pakistan. My journey, however, has not been an ordinary one, as I was born with a rare condition known as Congenital Erythropoietic Porphyria (CEP), a genetic disorder that affects the production of heme in the body. This condition left me with severe sensitivity to light and other challenges, making life difficult at times. CEP disease has not yet been diagnosed by any doctor in Pakistan. The American Porphyria Foundation helped me to diagnose my disease, where CEP friends shared their disease symptoms and experiences that were similar to my symptoms.

Growing up in a remote area like Hunza, where the landscape is stunning but resources are limited, life wasn't always easy. This disease made my skin too sensitive due to sun exposure parts, hands, and face being exposed to an affected by sun rays. Most of the time, I feel tired and weak. My eyesight is too weak due to continuous movement of the retina. According to eye specialists, the disease also affected the eyesight.  Despite my condition, I was determined to make the most of my life. I knew early on that I had to push through the adversity I faced to achieve my dreams. With the support of my family and community, I learned to adapt, develop resilience, and strive toward my goals.

Despite the challenges posed by my disease, I pursued education with dedication. I completed my Bachelor's degree in Public Administration from Quaid-i-Azam University, Islamabad—a journey that tested my endurance but fueled my passion for knowledge and personal growth. Every day was a new battle, but I kept moving forward, undeterred by the obstacles.

Completing my degree was a major milestone for me, as it represented not only academic achievement but also the triumph of spirit over the struggles that came with my condition. I have been serving as Savings Officer in the Finance Division for the last five years, where I am also learning professional experience along with my academic background. My goal is to continue my higher education in any developed country like the USA so that I can serve myself and my community in a better way. The problem that is still there for me is the vision problem of my eyes (Nystagmus disease), due to which I am not able to do my official work properly, I think if there is any problem for me to achieve my goal, it is the problem of eyesight. Anyway, I hope everything goes well.

Today, as I reflect on my journey, I am proud of the person I have become. My experience with Congenital Erythropoietic Porphyria has shaped me in ways I never imagined, teaching me resilience, patience, and the importance of never giving up—no matter the odds.

Thanks so much for listening my story.

Regards,

Ibadullah Khan