It took me 18 years to know that I have Acquired Partial Lipodystrophy (APL)
My name is Mizhda, and I was born in Hawraman, a place famous for its walnuts. I was born as pretty child with chubby pink cheeks. I had all the caring and love, not only from my family, but everyone around me. My mom would make me beautiful dresses, my aunts would always do my beautiful, long blond hair, and my uncle would always take me photos. Sometimes, random people would ask me for photos and the photographers in my local area would ask my mom for photos to put it on the front window of their studios. The young girls in my area would run to me giving me hugs, candies and bars of chalk, my favorite gift at the time. I was getting all the attention I wanted, and I must admit, I was loving it.
Everything Changed
I turned 7, and that is when everything changed. My beauty faded away. I shrank like a balloon. My upper body, face, arms and shoulders, became extremely skinny and instead I had fat accumulating in my lower body. I found my mom crying for me all the time, and my dad searching for doctors. From then, I spent most of my days in hospitals; on ways to clinics in different cities, and in waiting rooms to see doctors who did not even listen to me. All they did was doing some tests and trying to ensure my parents that I was “healthier than them.” And instead of all the caring, hugs, kisses and love I had before, I was now receiving pity from some people, and some others.. well, terrible comments. I was the same person with the same name, the same manners, and the same soul with the same favorite color, red. The only thing that changed was my look. I was only seven years old, and the only definition for beauty I knew was a person with nice words and nice manners. I found myself in the battle of comparing people’s words and attitudes before and then. I was too young and could not think of an explanation to why all the attention was gone. Imagine my agony and pain at the time!
The whole situation affected me so badly that I couldn’t concentrate on my studies anymore. I was always blamed for not being as successful as my sister, cousin and a close friend. I was told that I should study like them. And I did, but still failed. However, I was super active physically. I was always the winner in games both on the street and in my PE classes. One day, I was so happy when I heard that there was a sports competition among schools. I was sure I could participate. My sister, cousin and the close friends were all chosen but me. I was disappointed, a lot.
The Greatest Decision
Years passed. I was in 9th grade, and I couldn’t continue the same life. I had had enough. I felt I was old enough to decide for myself. I had to find who I was: what my preferences, talents and hobbies were. So, I interviewed myself a lot, I read a lot, I prayed a lot, and I found my true self and my own way, and I finally found success. I became the 2nd top student of the school. I moved to Sulaimani alone to follow my dreams when I was only 14. I won a bronze medal in Math Olympiad, a silver medal in my Physics Project, and the 1st poem reciter at school. I could study engineering, yet I chose English, and I managed to be the top student throughout all four years of my college study.
I was extremely happy with all these achievements. The better part was feeling love again; both self-love and that from people.
Despite everything, I was feeling over the moon. Though 18 years had passed, and I still did not know what my condition was. I was still trying to understand connect the dots, still wondering, and struggling.
Acquired Partial Lipodystrophy
After 18 years, my condition was finally named; Acquired Partial Lipodystrophy (APL) or Barraquer-Simons Syndrome. APL is gradual loss of fat (adipose tissue) in a person that starts with the face then the arms, neck, chest and abdomen. It can be caused by medications, autoimmune reactions or have an unknown cause. APL is a rare condition and women are affected more than men with a ratio of 4:1. Since the loss of adipose tissue cannot be reversed, so the treatment is limited to a healthy lifestyle, cosmetic and medical options to prevent complications of the disease. Parents can support their children with care, compassion to help their children with lipodystrophy. Parents can also reinforce positive body image and be open-minded about their children’s condition.
I am thankful that my condition was finally diagnosed after 18 years. APL made my life the hardest but the most beautiful and special one; that challenged me the most but taught me a lot of great life lessons; that depressed but brightened me up the most. So, my special syndrome has become the most beautiful part of me.
