One lesson I want my daughter to learn in life is that even though she has Sickle Cell Anemia, education is not optional. She is fully capable of learning and living with Sickle Cell. Everyday, I challenge her to do her best. Sickle Cell patients can still dream big and achieve their goals. I can think of many people with Sickle Cell Anemia who did not let their challenging circumstances hinder them from success (T-Boz, Lorenz Tate, Prodigy just to name a few). Today we’re hearing from Djanikah, who is another living example of a person with Sickle Cell Anemia accomplishing her big dreams. Thank you for sharing your experience with us!
1. When were you diagnosed with Sickle Cell Disease?
I was about 19 days old, a screaming baby with a fever. My mom took me to the hospital and I was diagnosed.
Well for starters, sickle cell sucks—like really sucks. It interrupts your life and inconveniences you with excruciating pain, (or pneumonia or Acute Chest Syndrome, etc.). I’ve had people tell me that I was “faking,” blame me for getting sick, and even people who were downright ignorant about it; so I make it my mission to educate. I used my hospital time as a kid to read. I was determined to go to college (though it took me almost six years to graduate, full time each semester) and grad school (four years for a three year Master’s in Acupuncture program). By the grace of God I have not let it beat me. I make it my life’s mission to help others, and to remind my pediatric SC patients that they can and should still dream big even if it takes longer to make them a reality.
3. What are some steps you take to stay healthy?
HYDRATE!!! I live off of water. I take my folic acid every day. I try to sleep (but I’m a chronic insomniac so it’s not successful). I try to eat healthy. And I’m not so good with the exercise, but I’m working on it.
4. How are you raising awareness about Sickle Cell Disease and how can others help support this cause?
In my graduate program, I volunteered as a case study because in my predominantly Caucasian school (and field) I knew that many needed a face to put to a disease that barely got five minutes of our class time. During my internship, I did the same with the other interns, giving them tips on dealing with SC patients. In Boston, I volunteered with the local organization (Greater Boston Sickle Cell Disease Association), helping run their office for a few summers and participating in the Sickle Cell walk. I try to educate anyone I can about it.
Honestly a little goes a long way. If someone can’t walk, they can sponsor someone. There are walks hosted all over the country for Sickle Cell Disease. They can donate to help research. They can READ and share information. They can get tested. Any little bit helps!
5. Is there one myth that you would like to dispel about people living with Sickle Cell Disease?
We are NOT all drug addicts. I can’t tell you how many times I’ve been treated as such in a hospital setting. The pain is excruciating and sometimes Tylenol does not cut it.
We aren’t faking, or making ourselves sick. Chronic pain is exhausting, and fatigue is a real part of the illness. So is insomnia. Yes, we are in pain often, but it’s not any less real because it happens so often.
We are not victims of the disease. We suffer frequently, but they are only temporary setbacks. Some people become overwhelmed and play the victim, but for the most part we are fighters, warriors, struggling to maintain lives in the midst of a painful and debilitating disease. And we’re winning.
6. What do you want the world to know about Sickle Cell Disease?
We are here. And we need a cure. And we need it now. So read about it and then donate.
Are you enjoying my #30forSickleCell series? If so join the conversation:
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Thanks for reading!
Read the other #30forSickleCell posts here:
- September is National Sickle Cell Awareness Month
- #30forSickleCell Know Your Sickle Cell Trait Status
- Sickle Cell – A Parent’s Perspective #30forSickleCell
- Sickle Cell – A Hematologist’s Perspective
- Sickle Cell: A Firsthand Look at T.J. Brown’s Holistic Experience
- Sickle Cell: Erase the Shame and End the Silence #30forSickleCell
- How Can Family Members Support Someone With Sickle Cell? #30forSickleCell
- Can a Biracial Person Have Sickle Cell Anemia? #30forSickleCell
— CleverMom (@Cleverlychangin) September 10, 2014
It’s National Sickle Cell month and I’m back ...