Today we will be speaking with Tiara Williams, a 21 year old from Chicago, who is a dedicated student and warrior. Her goal is to do Social Work and social services for the elderly, and despite facing some obstacles due to having Sickle Cell, Tiara continues to press forward towards her dreams everyday.
Tiara, can you tell us how old you were when you found out you had sickle cell?
I was born with sickle cell, so at the age I really knew what it was, I was probably around 7 years old.
How were you able to cope with school and sickle cell?
During my younger years I had a lot of problems with the disease. I was able to balance school and sickle cell by having check-ups with my doctor and taking my medication. When hospitalized my mother would go and pick up my work from school or a teacher would bring it to me. That was the best way so I wouldn’t get behind with my work. I was only hospitalized a few times between kindergarten and third grade. There was some cases were I couldn’t take Physical Education or climb the stairs.
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 10 years old because my doctor said my symptoms weren’t as bad as most. After coming off medications I still had to eat healthy and know through the pain I could make it. There was a period in my life I was considered underweight. My doctor wondered 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 potato once a day. Not once a week but a day, my diet changed right away.
How did your childhood and your parents influence you in your choice of career?
In choosing a career I wanted to follow my mother’s steps and become a teacher. I love helping people and am attracted to young children and the elderly. So I chose Elementary Education for a major. But after my first year of college I changed my major from Education to Family Services. I want to do Social Work and social services for the elderly. So that’s where I am today going into my senior year at Eastern Illinois University. I will graduate in May 2015 and plan to pursue a Masters in Social Work in Fall 2015.
How do you manage SCD and still maintain a thriving career?
I manage my health and being a full time student by eating properly, getting my rest, exercising and taking vitamins. I have worked in fast food and retail but neither job was a problem.
Have you noticed a difference in how your coworkers treat you once they know you have SCD?
My managers and co-workers knew that I have SCD and were very helpful and caring at anytime. I think it’s important for managers to know about health problems if something was to happen and you need take off or be covered.
Has sickle cell limited any areas of your life?
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. 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 over night clinic and they monitored 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 with 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 would come out all right. 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 stopped 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 very large. She said it would be best 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’re like why? Well having sickle cell, surgeries can lead to other problems. At the time I had a big fear towards things like this. My family and peers kept saying go ahead and 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 with her on it. My mother was never forceful; she always said it’s your decision. Remind you I’m like 15-16 years old. The doctor also told me, with you having sickle cell you may need a 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, “Naw, 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 wasn’t anything but faith and God to bring me to the point I am in life today. Although I still have sickle cell, I am able to live with it as if I’m 100 percent healthy. I still go to the doctor for physicals and check ups. All they say is I’m fine and keep doing what I’m doing.
Do you have regular pain (more than 2x a week)? How do you cope with this when you are working?
I have pain some days and especially the winter months. Sometimes I want to stay in bed but I know that with pain meds and the proper amount of water within a couple of hours I am back moving. If you want to have a healthy and enjoyable life, I recommend living by doctor’s orders. Eat healthy which includes more food to help build the blood. Drink ample amounts of water daily.
What is your daily medication regimen and what medications do you take when you are in pain?
I am not on any prescribed drugs, but it has been recommended by my doctor to take folic acid daily. So I do that along with some other vitamins like, B12, B6, iron, calcium and a Multivitamin.
How has sickle cell affected your personal life? For example, are you in a relationship, do you have kids, etc.
So with sickle cell, my life doesn’t stop. I don’t have extreme stories like others. But I am a living patient with this disease.
Sickle cell hasn’t affected my personal life in any way. I do set limits and boundaries for myself and everyone should. I know not to over do it and for me my rest and diet is important. Everyone that knows me knows I have this disease and ask am I ok and what things I can and can’t do.
I have no children at this moment. But I plan to have children in the future. I am not in a relationship, but past relationships my partner knows I have SCD. I think it’s important to share that information with friends and partners.
Is there anything else that you would want to tell other sickle cell warriors?
My word of advice to any individual young or old living with sickle cell disease is to eat healthy, 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.” Be well!
Thank you so much for doing this interview!!!