ALS: More Than Just A ‘White Man’s Disease’

Twenty-one-year-old Aleia Kristene is a senior at Florida A&M University, majoring in Occupational Therapy.

She began writing a screenplay entitled “4 Voices Unheard” in June of 2015, 6 months after losing yet another family member to the tragic disease of Amyotrophic Lateral Sclerosis, better known as ALS — four family members total so far to the same disease. Aleia shares her experiences with seeing her family suffer because it is therapeutic for her to talk about it, as well as spread awareness. God reminded her of what she was put on this Earth to do, by giving her a few angels along the way.

“This situation is extremely rare and heartbreaking for my family and I. I even had an aunt diagnosed just as recently as last October. I want people to understand that although it is rare, it can affect anyone. It hurts when people don’t know much about the disease or have never heard of it when I’ve been witnessing symptoms from various cases since I was about six years old.”

BlackDoctor.org recently chatted with Aleia to see how she deals with being so close to the disease.

BDO: When did you first learn about ALS?
I first learned about ALS when I was 6 years old. It was during my aunt Jackie’s wedding when I noticed her foot beginning to drag while walking down the aisle. Overtime I begin to notice other symptoms. She begin to wear foot braces, then started to lose certain muscles one by one, until eventually she could not walk at all. She later struggled to breathe on her own. Growing up I was confused as to what I was witnessing. I didn’t understand why these things were happening. I started to do research on my own, and the little information that I could find about ALS helped me to somewhat put the pieces together. The main factor that stood out to me is that 93% of people with ALS were white.

BDO: Did your family members all die suddenly? How did that affect you and the family as a whole?
“Every ALS case is different. My grandmother started having symptoms in 1993. She was diagnosed in October of 1994, and passed away 2 months later in December, 1994. She gave birth to 6 children, and 3 of them have passed away from ALS in the last 7 years. My aunt Jackie lived with the disease for about 8 years. Most ALS patients are given 2-5 years to live after diagnosis. She was diagnosed in about 2005 and her battle ended in 2009. My uncle Elijah Jr lived a short 2 months after being diagnosed. And my aunt Sherri passed away suddenly 7 months after diagnosis. This has affected our family tremendously.

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We were a very close knit family. Every holiday was spent together, every birthday was spent together. My family was very musical. Always singing, and playing instruments. After each loss I can see less interaction between the rests of our family members. Everything feels different. We are all still hurting. People fail to understand that the pain doesn’t go away. When we were finally coming to terms with one death, then we were left to face another period of grieving. I was once in a dark place. I saw the most out of all the nieces and nephews of the family. I witnessed and heard a lot of things. I was once confused, hurt, and was beginning to lose my faith. But I begin to realize that God was building me into the person I’m meant to be. When my family begin to feel hopeless and lost, I decided to write a film about our story, and share it with the world, so we won’t feel so alone.

BDO: What do you think is most misunderstood about ALS?
“That’s a white man’s disease, I can’t get ALS”. Lol. I’ve heard this all too many times. Our story and case is extremely rare, but ALS affects anyone. I know several blacks with ALS. Not a bunch, but several. It’s just very scary and unfortunate when there is a familial gene of it in a family.

BDO: What do you want to accomplish with your film?
I want to paint a clear picture of what ALS actually is. A lot of people “think” they know what ALS is. Anybody that I ask can never give me a clear definition of it. I want people to see how important family is, and not to take life for granted. I want to be able to become an advocate for ALS, and a mentor to children/young adults who have a disease that runs in their family. I want to be able to launch into my dream career of screenwriting, directing, and acting with this film under my felt. I feel that this being the first movie of my career would show the world to not be ashamed where they come from, to keep fighting for what they believe in, and to never give up on their dreams no matter the circumstances. And ultimately, I pray that this film will be the spark to a cure being found.

BDO: How can we as the Black community help those who are truly affected by ALS?
We can start by not overlooking ALS/Lou Gehrig’s disease because it is known as a predominantly white disease. There are many people in the ALS community who are African-American. Former Baltimore Ravens linebacker “O.J. Brigance”, Blair Underwood’s late grandmother, and Courtney Vance’s mother all had or have ALS. Let’s reach out. Let’s…