How old where you when you found out you had sickle cell?
I was diagnosed with SCD when I was born. I think I have always known just never really understood until I was 8 or 9.
How are you able to cope with school and sickle cell?
When I was younger coping with school was easy. I maintained my grades. However, since I started high school it became harder to cope with. This was my first year in a magnet program and it’s quite rigorous. I missed about 75% of my freshman year. I just recently returned to school in January after sitting out since November due to being sick. It has definitely gotten harder but I’m dealing with it.
How did your childhood and your parents influence you in your choice of career?
Well since I do have Sickle cell I would like to one day work with SCD patients. My childhood has influenced this because I want generations after me to have it a little easier than I did.
What are some of your coping skills with sickle cell? When you do reach obstacles in your life, what helps you through it?
I manage sickle cell and still maintain a normal life by praying daily and being strong willed. The best way to live and healthy life is be prayerful and not allow this disease to overcome you. When I reach obstacles I pray my way through, I turn to God and ask him to help through my rough time. I look to my family and close friends to strong for me and to just hold me up a little. I try to always remember that there is a light at the end of the dark tunnel and trouble does not last always.
Have you noticed a difference in how people treat you once they know you have SCD?
With SCD I have noticed that people do treat you different, they treat you as if you are contagious and then some just treat you like you cannot do anything for yourself and they just pity you. I for one do not want to be pitied I am a person and I have feelings, dreams, and hopes just like the next person.
Has sickle cell limited any areas of your life?
Well SCD has limited many areas in my life because I allowed it to; I was afraid to tell people I had the disease and it stopped me from doing a lot of the things I wanted to. I didn’t want to be treated differently or judged, so I shied away from people. As I mature, I’m becoming a more open person and not allowing SCD to control my life.
Do you have regular daily pain? What is your daily medication regimen and what medications do you take when you are in pain?
Yes, I have regular pain and to cope with is I take meds and pray. I take Hydroxyurea, Folic acid, Penicillin, and Exjade daily. For pain I take 1-10 mg Lortab and an 800 mg Ibuprofen (Motrin) every 6 to 8 hours.
How has sickle cell affected your personal life? For example, are you in a relationship?
When I was younger it affected my life because I was ashamed of the disease and I didn’t tell my friends. I’m older now and all my friends know about my disease and they are very supportive of me. I have a special person in my life, he also has the disease but we are only teenagers. I have a special someone…and guess what? He has the SCD as well. I know it’s risky but we’re young, and are still teenagers. He is so sweet, he is easy to talk to, we take care of each other, and we care a lot for each other’s health. We share the same doctor, take a lot of the same meds and have bonded on our commonalities. He is really easy to talk to, and he goes through a lot of the same things I do. Even with dealing with other guys I’m up front about my disease but not many people have cared.
Looking at the 14 year old version of yourself, what would you tell her if you could…?
I would want to tell my younger self (cause I’m only 15:) that it is okay to have SCD. It’s nothing to be ashamed of and that I am not alone I am not the only one going through the things I go through. I would also tell my younger self to take my meds and do what I am supposed to do for my health.
Is there anything else that you would want to tell other sickle cell warriors?
[stextbox id=”custom”]To all my SCW be strong boo! You are not alone, and we are the STRONGEST people ever. Other people could not stand in our shoes and walk a mile. We are special and we are unique people our lives are just a tad bit more challenging than the average person.[/stextbox]
Hi my name is Laura I’m 25 and I have Sickle cell Disease as well I have been meaning 2 get in stay in contact with ppl that have SCD has well and can relate 2 me I am the only one in my family with the disease my siblings and otha family members have the trait I can say my crisis and pain hasn’t been as bad recently It’s just I have a lot of leg muslce weakness and it really gets me down when I’m not able 2 move or get up and down stairs as a 25 year old should I stress alot over it I have family support it’s just I wanna be independent and not depend on any one else I see my friends and life passing me by I have determiniation not 2 give up but it gets frustrating when u don’t have anyone 2 really understand u just lookin for more inspiration.
Hello, my name is Mercy, I am from Nigeria and I have Sickle Cell Disorder too. I am happy to meet fellow warriors like myself. I truly like and appreciate your spirit Jazzlind, especially for the reason that you are not ashamed of telling people about you Disorder.
I would like to tell Laura to please be strong because her suffering would soon be over although it may seem to be taking long. I can say this because I suffered from painful leg ulcers that kept me down for about eight years of my life and even affected my schooling.ow I am 28 years old and still struggling to make sense of my life without giving up.
However difficult that period of my life was, it is over now and I am free to be myself again all thanks to God and my Family(especially my Mum). So just be assured that whatever you are going through now would one day be over. All you need to do is to draw strength from sincere words of prayer to God, be positive in your thinking and try to surround yourself with friends who understand your pain and the years would fly by within the twinkling of an eye. H