Providing Answers, Support and Hope in Pennsylvania, Delaware and Southern New Jersey

Meet Kaelyn

Read more about her, her story, and starting a support group for kids!
 

What is your lupus story?

I was first affected by my lupus when I was 13. It was very sudden; it began with pain in my right knee, which at first glance my doctors determined to be a torn meniscus. It quickly escalated into much more, with swelling in all of my joints that made it both difficult and painful to move. I also struggled with the infamous butterfly rash and constant fatigue. At this point, we consulted several doctors, who were stuck between a few diagnoses. Eventually, we were able to come to the conclusion that I have SLE.

Being diagnosed at such a young age was a terrifying thing. It can be difficult to comprehend the meaning behind it; at first, I was solely concerned with reducing the pain I was in. What I did not understand at such an age was all that would come with my diagnosis, the ups and downs of such a disease. At first, I felt trapped inside of my own body. I dealt with an extremely painful flare for roughly five months before I was first medicated, which taught me a lot about myself and my strength. I had constant support from my family and my close friends, but mentally I had to face that journey alone. Although being diagnosed with Lupus is a terrifying thing, something I was recently told is that you can always take bad experiences and turn them into beautiful things, and that is why I decided to create a support group dedicated to children and teens that suffer from Lupus.

What advice would you give to someone who has recently been diagnosed at a young age?

My best advice to someone who has recently been diagnosed with lupus, especially at a young age, is to not be afraid of it. One thing that I have heard from many people is that in the beginning, they were scared to talk about it with others in their lives. I will admit, this was something I did at first too, but as I became more comfortable admitting to others I have lupus, I realized that it is a part of who I am just as much as anything else I would use to describe myself.

I think the biggest misconception with this is that speaking out means that lupus defines you; it doesn’t have to define you, but it is a part of you that you will come to accept as just another piece of who you are. As well, I would advise that you really dive deep and learn more about what lupus is. A lot of the time, when I tell people I have lupus, they have no idea what it really is. The most common response I get is, “Isn’t that what Selena Gomez has?” and I have to explain a little more of what it is before they really understand how it affects me.

I was first introduced to the Tri-State chapter through my rheumatologist when I initially mentioned my idea for the support group. From there, I was able to connect with several amazing people who have been amazing in helping me on this journey. The idea for my support group came when I was first brainstorming ideas for my final Girl Scouts project. This project, for those who are unfamiliar with the Girl Scouts, is called the Gold Award, and it is the highest award that is achievable for girls. This is an individual project, so I decided it would be a good idea for me to make it something I am able to connect with on a deeper level. I chose to work with children and teens with Lupus because looking back, I did not have a lot of support in my initial battle with lupus. Of course, as I mentioned, I had my family, and a few friends who I could turn to, but it is a very difficult thing to explain (especially to middle schoolers). Not knowing anyone my own age that understood my suffering made it all the more difficult, so I thought that making a support group for this age group would be extremely beneficial if they have had any similar experiences to mine.

The topic for my first meeting was what Lupus really is. We took a deeper look into the disease itself and had a great discussion about our personal experiences. This meeting went great and it was really exciting to see it play out. It did not go exactly as expected, as I would have liked to have had more members than we did but overall, it was still an amazing experience. I hope that it was an enjoyable experience for our members who were able to make it, and I hope to have a few more people at the next meeting. The topic for the next meeting will be navigating high school and college with Lupus. I have a few exciting guests attending this meeting to talk about personal experiences and many other exciting topics for future meetings.

Thank you so much Kaelyn for sharing you story!