My name is Tiara Williams and I am 20 years old. I am a young female student at Eastern Illinois University studying Family Consumer Science with a Concentration in Family Services. I was born on February 23, 1993, with a disease known as Sickle Cell Anemia. I have been living with this inherited blood disease and want to share my story. Sickle Cell Anemia is an inherited blood disease that is mainly found in African Americans and Hispanics.
Living with Sickle Cell in my younger days was hard. The pain was constant for some periods of time. There were certain physical activities that I couldn’t do. It was as if I was not normal. Having sickle cell as a child many of my peers didn’t know what it was and couldn’t relate. Hearing other stories online, on the news, and even in a doctor’s office made me consider myself blessed. I was blessed because through the pain and the situations I wasn’t like other patients living with sickle cell that had to have blood transfusions more than once a week as well as being on medication.
Although I was young and at some point, I had to be hospitalized and even miss school, I still understood that I was blessed. I was on medication until I was about 9 or 10years old because my doctor said my symptoms weren’t as bad as most. After coming off medications I still had to eat healthily and know through the pain I could make it. There was a period in my life I was considered underweight. My doctor wonder why I wasn’t gaining any weight as I became older and into my teenage years. During this time I had to stop having physical activities in school and outside of school. I was told to change my eating habits which had to include some type of ice cream and potatoes once a day. Not once a week but a day, my diet changed right away.
Being young I really didn’t know what to expect. I would just pray and say The Lord will bring me through. Going through this period in life I never wanted to give up. I looked at it as a test and knew that there are people in the world dealing with more problems health-wise than me. As time went on things started to get better and look like everything was going right. I had a doctor check-up every 6 months regularly.
During my freshman year in high school, I started to become out of breath a lot. Never knew why, it was like I would give out walking a short distance. I knew then something was wrong, back to the doctor I went to. This time my doctor had me take a full physical. Everything turned out good. Then she recommended a sleep apnea test. This was when I had to spend the night in an overnight clinic and they monitor my sleep. I set the appointment and went on and did it. Through the test, I was nervous and still didn’t know what I should expect. I was glad my mother was able to go and sleep in the same room as me. The next morning came and the nurse said the test is over and your doctor should have your results within a week.
We left knowing that everything will come out alright. I was and still am a true believer that God will heal me and everything is in his hands. Around a week later my doctor calls, she says the results are in and you stop breathing over twenty times in your sleep. I’m like man, it’s nothing but God keeping me. Although there are others out in the world with this same problem, I didn’t know what this meant for me. She brought me back into her office and examined me and found out my tonsils are huge. She said it will be the best bet to get them removed right away. My doctor wanted me to make the appointment that same day. I’m like I really don’t want to do the surgery. I know you like why? Well having a sickle cell, surgeries can lead to other problems. At the time I had a big fear of things like this. My family and peers kept saying go ahead in do it. It will help you out in the long run.
I had to think about it. I told the doctor I will get back to her on it. My mother was never forceful, she always said it is your decision. Remind you I’m like 15-16 years old. The doctor also told me, with you having sickle cell you may need blood transfusions during this surgery. I have never had a blood transfusion remind you. Many hear of the different outcomes of these transfusions which sometimes aren’t good. So in my head, I’m like no, I’m not doing this surgery. I’m living with these tonsils till God says differently.
Although my breathing wasn’t the best, I did just that. I am 20 years old now and I still have them. I can say that I’m blessed, healed and it was nothing but faith and God to bring me to the point I am in life today. Although I still have sickle cell, I can live with it as if I’m 100 percent healthy. I still go to the doctor for physicals and checkups. All they say is I’m fine and keep doing what I’m doing.
My word of advice to any individual young or old living with sickle cell disease is, to eat healthily, drink plenty of liquids mainly water, and see your physician at least twice a year. Know your health and keep and maintain a healthy life.
As always remember “God can and will bring you through”
Tiara M. Williams
