Harlem, New York (United States)
KEANNA ORLANG
Scleroderma Stories Issue 2
Please introduce yourself
I am from Harlem, New York, but I currently live in Long Island, New York. I like to listen to music, sing (although I don’t sound so good) but I would say it helps me to feel good. I love working out, & just hanging out with my loved ones. I have a French bulldog named Mazi.
The most important factors of my life are God, my child Kaelon, and my husband/child’s father, Sayquan. God has helped me get through so much in life & I know for sure he’s always with me. My child, my miracle, my king, Kaelon, has taught me to continue the fight. Though I have painful days, I never let him see me down, so he can grow up to know NOTHING CAN KNOCK him from what he wants in life. Sayquan has been by my side since high school, always reminded me we are in this fight as ONE, and never left me alone or made me feel alone. My family is EVERYTHING to me!
I can’t forget my scleroderma sisters/brothers that I have been connecting with on social media. I am thankful and grateful for them all.
Could you please describe what led to your diagnosis?
My mom noticed changes, such as my fingers curling and my legs getting stiff. You can actually see that my hands curled when you look at old photos of me. I could barely open my hands when I was younger. I was always turning purple in my fingers and toes, and I was always in pain. Sores developed on my fingertips and toes as well.
When my mom noticed the changes, she took me to see what was causing the changes. They sent me to a place and took a piece of skin from my arm to test it. That’s when they told my mom it was scleroderma. I still have a light scar of the spot they took skin to test.
What was the experience of growing up as a young child with scleroderma like?
I used to be alone in parks while kids were playing and used to cry at times because I couldn’t play like the other kids could. I used to wear rubber fingertips. Other kids laughed at me for that. I also had some family members, adults (sad to say), speak down on my disability and wish bad on my health.
I never had a support system growing up from my family like how I see MOST scleroderma people have family members doing walks with shirts. I never had that. It will be like a finger count of people that’ll show love and try to show support.
I always felt like an outsider. I honestly really made myself who I am today by telling myself at all times that scleroderma is just a word. I would force myself to play even through pain. I would fall, get cut up, and cry hard – not because of the cut or bruise, but because I felt I had to fight my way to live life normally.
Keanna’s hands now
Did having scleroderma affect your ability to attend and participate at school?
I attended a regular school from kindergarten to fifth grade. Eventually, I was having problems in school from getting teased and bullied. I was also slow at writing and always in pain because of my fingers, so I wasn’t at the same speed as other students. In gym class, I couldn’t fold my legs or do certain things that my classmates were doing.
After seeing me go through all this, my social worker told my mom about a school called “Blythedale” for special needs, and told her that I had to be transferred there. I was at Blythedale until 8th grade, and then I went to another high school for special needs called “Henry Viscardi” and finished high school there.
I felt more welcomed at Blythedale and Henry Viscardi, because there were people with all kinds of disabilities. It taught me to be grateful for what I can do. At Henry Viscardi, I met a girl that had scleroderma as well. We spoke somewhat, but not as much as we should’ve. But, I thank god that I met her because I knew I wasn’t alone in school.
What effect do you think scleroderma has had on your goals and mindset?
Before, I was really low on myself and felt as if I was never going to be great or never going to conquer my goals… But now, with time, that mentality has changed.
I fight every day and push myself now as a mom to do everything in my power to move forward and DO everything that other people think people with scleroderma CANNOT do. I just tell myself every day, “Just because you have scleroderma doesn’t mean you can’t do what people without it do.” If you put your mind to it, you will get through it and make it happen, even if it takes a slower or different way to make it happen.
I know I CAN and will make it happen!
When you were pregnant with your son, were there any difficulties because of your scleroderma? Are there any difficulties now?
Not anything too serious. I just gained weight, which I had never gained before. I felt so happy with myself. Now, I lost all that weight, and I’m back to how I was before with no difference in weight, thank god.
I delivered him through c-section, but I healed up great as well and took good care of myself through it. The only difference now is that I started losing my hair. So, before I lost a lot, I cut it off myself.
Have scleroderma’s effects on your physical appearance influenced your confidence or view of yourself?
Yes, it has. I always wanted to see how I would’ve looked before scleroderma. But it attacked me so young that I never had the chance to see how beautiful I would’ve been. I think of this everyday: “how I would’ve looked before this happened.”
I met a lot of sclero girls that saw their looks before sclero, but I never had that chance. I don’t feel so pretty but, HEY, I am like this, so there’s nothing I can change.
As someone with scleroderma, have you had to make any special adjustments due to the coronavirus?
I just stayed in for 3 months. When I needed to go out for important things like grocery shopping, I made sure to wear gloves and masks. I just kept away from others, and I’m still keeping away as much as I can.
What do you think is the hardest part about living with scleroderma?
Being looked at weird, and just people not knowing how to show support and not knowing what pain we feel on a daily basis. Not having family support and feeling tired all day every day is also really tough. To be honest, my son, my husband, and God motivate me on the more difficult days and make me feel like nothing is wrong.
Do you have any advice for those living with scleroderma or other chronic illnesses?
Just be who you are and don’t let scleroderma have you. You have scleroderma, and you’ll beat its behind.
Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.
Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us
