Jan. 24, 2021
Posted by Laura Mullen
You are featured in the 2021 Rare Disease Day international campaign as a patient “hero” from the United States. Why is Rare Disease Day important to you?
I‘m so honored to be a part of this amazing campaign. Rare Disease Day is important to me because it’s a day when a spotlight is focused on people worldwide who are living with rare diseases that most people don’t even know exist. We are given the opportunity to show up and represent ourselves as well as our rare disease community. On Rare Disease Day people from all different walks of life come together, and it‘s beautiful thing. Watching, learning and listening to each other’s stories is awe–inspiring; raising awareness and having the world become more understanding about life with rare disease is incredible. I’m so happy a day like this happens every year.
Is there one thing you’d like the world to know about life with a rare disease?
Living life with a rare disease like sickle cell is a roller coaster at times. There are many ups, downs, twists and turns daily. Some days I feel great, as if I could conquer whatever the day will bring. The next day, or even a couple of hours later in that same day, I can feel drained, run down and pained from sickle cell fatigue. I’m constantly trying to map out how much energy I will have to tackle daily tasks. That’s why I usually schedule any medical appointments or physical therapy for the early afternoon. I know that I tend to have more energy to accomplish tasks after 1:30pm, or 2pm. Once 5:00pm hits I start to slow down, and by that time I’m making dinner, which leads into the evening and chillaxin’ with my family for the rest of the night. On the rare occasion that I do have early morning things to do, I’ll go at my own pace. That’s what living with a rare disease is like for me: unpredictable but manageable.
What have you learned from living with a rare disease?
What I’ve learned over the years is that you always have to stay ready. Because this life comes at you fast and can flip you and your family’s world upside down in a hurry. One minute you can be laughing at a party, kicking it with friends. Then a minute later, in the same night during that same party, your friends are literally carrying you out screaming and crying in pain due to a sickle cell pain crisis that came on all of a sudden. That’s a true story. Thank God I was with my best friends who knew about my rare disease and got me to the ER within minutes, while another friend called my Mom to let her know what was happening. This was when I was 19 years-old at a college party at 12:30am at night too. So that’s what I mean by always staying ready. We’ve even gotten to the point that I always have a “go bag” specifically packed with my things for an ER/hospital stay if need be. That way I can grab it on my way out the door, just in case. It’s part of my reality of life with a rare disease.
“When you have a life-threatening disease like sickle cell, it really opens your eyes to value your time and the time of those around you more” Care to expand on this thought?
What I mean is life is precious. Everyone is on borrowed time, and no one is promised tomorrow. When you have a life-threatening disease like sickle cell you’re constantly being told that by doctors and other medical professionals. I believe, as I always have, that God has the final say about everyone’s life, hence my still living well with sickle cell at 37 even though doctors told my Mom when I was diagnosed at six months that I wouldn’t live past 20! (Thanks and praise to God for that blessing.) However, hearing stuff like that over and over, you start to look at not only your life differently, but also at your loved ones’ lives too. Knowing that every minute you have with them is precious, every laugh you get with them is a special moment in time that will eventually become a memory. I just don’t take life for granted—not mine or my loved one’s—because life is something to be valued and cherished.
What’s next for you to conquer? Any big plans, goals, dreams?
That’s a good question. I can’t wait to get back to doing in person/public fashion shows again. I’ve so missed being at New York Fashion week and sharing public spaces with people comfortably. You know, the way life was before COVID-19. I want to get back to vacations and traveling with my family. Going out to dinner with friends. Also, I really want to have kids. It’s always been one of my biggest dreams in life. And I plan on continuing my advocacy work as a professional patient advocate and ambassador for various sickle cell disease orgs, raising sickle cell awareness until we have a universal cure for everyone living with this disease. I’m going to continue working on becoming a well-known national and international public figure to really have a platform and a huge voice to help continue to bring about awareness to rare diseases, people with disabilities and sickle cell disease in all mainstream media worldwide. That’s the plan. 😉