Walk Ambassador Carissa Calascibetta

2021 Virtual run, WALK, ride ambassador, Carissa Calascibetta. LSI Associate Board member and walking for LSI Associate Board team.

What kind of lupus do you have?
I have SLE.

When was lupus diagnosis?
My lupus diagnosis was 3 years ago.

How long did it take for a correct diagnosis?
It took at least six years for a correct diagnosis.

How has your life changed?
My life has changed drastically. I wear baseball caps and sunscreen religiously while outdoors because the sun drains me. Due to the muscle and joint pain, I had to learn how to say, “no” to some things. Prior to the diagnosis, I would always attend everything and push my limits. However, if I overdo it now, then I go into a lupus flare-up. One of my flare-ups caused me to have difficulty swallowing solid foods. I was forced to go on a liquid diet for two months and had to attend speech therapy to learn how to swallow again. Currently, I feel extremely fatigued, my liver is not doing well, and I have a malar butterfly rash on my face.

Does anyone else in your family have lupus?
No, no one in my family has lupus.

Do you find support from your family members with lupus? If so, how?
At first, I did not have support from my family members with lupus. No one in my family understood what lupus was until I educated them. It was not until I had a flare-up that my family realized how serious lupus was and how it affected my body.

How did you first become involved in the Illinois Lupus Walk and the Virtual run Walk ride?
After my diagnosis, I wanted to help spread more awareness about lupus. Therefore, I researched ways on how to get more involved locally. That is when I came across the Western Suburbs Illinois Lupus Walk in Naperville.

Why do you think the Illinois Lupus Walk and the Virtual run Walk ride is important?
I think that the Illinois Lupus Walk and the Virtual run Walk ride is important because not many people know about lupus unless they are personally affected by it.

How do you make the Illinois Lupus Walk and the Virtual run Walk ride personal?
I make it personal by getting my family involved with the walk and fundraising process.

As a Team Captain, what are your goals?
As a Team Captain, my goals are to spread awareness about lupus by educating others as well as fundraising.

Has a lack of public awareness about lupus affected your quality of life?
I do not feel that the lack of public awareness about lupus has affected my quality of life. For instance, if someone does not know what lupus is, then I will explain it to them. Also, I encourage them to do further research on their own to learn more about lupus.

How did you find the LSI?
I found LSI during the time in which the Western Suburbs Illinois Lupus Walk occurred. I spoke to Mary prior to the event and met her on the day of the walk. On the day of the walk, she introduced me to some of the Associate Board members and I started joining some of the meetings. However, it was not until 2021 when I got more involved with the Associate Board. With the restrictions of COVID, I felt that I had more time to dedicate to LSI.

How has the LSI helped you cope with lupus?
LSI has helped me cope with lupus by making me feel like I am not in this alone. As an Associate Board member, I am not only involved with event planning, fundraising, and spreading awareness, but I also have made connections with other members. Each LSI member has a connection to lupus, either he or she has it or knows of someone who does.

What would you want the world to know about lupus? Why?
I want the world to know that there is not a cure for lupus yet, so we need to get more involved by informing and educating others. The Illinois Lupus Walk and the Virtual run Walk ride will help us do that.

Join Bill & Patti and hundreds of others by participating in the Virtual run WALK ride for LUPUS! www.lupuswalkil.org