08 February 2017

Afnan's Story

Afnan"A long time ago when I was born, I wasn't like normal babies. I was born very weak and unfortunately weighed less than a healthy baby should. Fortunately an American female doctor was present during my birth who made all the difference. The weakness I had was quite alarming hence my parents worry which was followed by several tests regarding my health but nothing was wrong at that time. All through my teenage years I was known as a girl who wasn’t so pretty, attractive in the conventional sense and weak. Family can be very annoying at times and my relatives proved nothing else. They would often question my parents, 'is she your daughter? Because she doesn’t looks like anyone of you! Do you give her enough food? Does she eat properly? On and on, this interrogation went and every affair resulted in the same badgering. At one time I thought that maybe I was different, that something was wrong. I was the only one in family crying over more food, anything and everything to help me gain weight, to fill in the clothes that I used to wear. I was skinny, but that wasn't it. I could live with being skinny, the heart of the matter was I looked different and I knew that, and my friends, well they never allowed me to outgrow my constant worry about my looks. I was made fun off, and I had to endure that. No clothes suited me, they just wouldn't fit. I looked like a skeleton and I used to compare myself with others, their looks, their appeal. I looked awful while everyone else looked beautiful. As luck would have it, that wasn't the least of my problems. At the age of 17, I was diagnosed with diabetes when my stomach got upset a few times. As per the society’s view I was scared to use insulin so I was prescribed homeopathic medicines. However it did not work and my health deteriorated, including my eye sight which got weak and many health issues started to show up.

My life changed after that. I started taking oral pills and insulin injections four times a day. The procedure was painful and without results because even then my blood sugar level was not normal.  After two years I started having pancreatitis attacks and I was off and on a victim of it. I left schooling as I was not stable enough to perform regular activities. Meanwhile my parents went to the states and met the same lady doctor who was present during my birth. Hearing about my illness she gave my parents the details of Dallas University. They came back and I started contacting doctor Garg and he asked for my blood samples. He confirmed with me that I had Congenital Generalized Lipodystrophy (CGLD). Thus I came to know about this new term at the age of 20. I was keen to research about my disease and found this group on Facebook, where I started talking to Leanne Tavares. She referred me to her doctors at the National Institutes for Health (NIH) and offered me to start the Leptin treatment. Meanwhile I was suffering from pancreatitis attacks badly. I finally made it to NIH and started with the Leptin injections in 2012. This was a miracle; my pancreatitis attacks disappeared and my diabetes got better and better.

I cannot thank God enough for making me get this treatment. Although minor health issues are a part of life, no one believes me that I suffer body aches every day. It’s hard to express how one feels to live in a society where you are judged by looks, but I am living it to the fullest, making the most out of a worse situation. Making everybody laugh and staying positive is the only remedy to cater any illness, be it a life time disease. . I am glad I am the first Pakistani girl to share my story.”

~Afnan Zia, Pakistan Islamabad

Related

You need to login in order to comment
Share your Story

Help others learn about Lipodystrophy by sharing your story. Your personal journey will help inspire and connect other Lipodystrophy patients and inform rare disease stakeholders and the public about this rare disease. Raising awareness through story-telling is an effective way to advocate! Email Global Genes to learn more.