#YPFit Testimony: Journey With Lupus


Black people are disproportionately affected by certain illnesses - one of those is Lupus. African Americans are three times as likely to be diagnosed with lupus and the majority of those affected are women. Here is a testimony from NULYP Secretary Charlene Luma on living with lupus:

It was the summer before my senior year in high school and I couldn't be more excited. I was a good student at a great school in Boston, on the cheerleading team & yearbook committee, had my driver’s license and had been working. By teenage standards, things were going pretty well. My biggest worries were narrowing down which college I would be attending, spending time with my boyfriend and figuring out how I would save enough money to get a car.

From a young age, I have always been on the go and had multiple things going on, requiring a substantial amount of energy. So when I woke up one summer day not feeling well with fever and lethargy, something didn't feel right. Initially, it was thought I had a cold or some type of bug. So I just kept it moving and prepared for school to begin. As the school year began, the same symptoms persisted, this time I also had joint pain and headaches.

Suddenly, this active honor student couldn't get out of bed to go to school and was nearly failing English class! My doctors just couldn't figure it out, coming up with several diagnoses' including the flu & mono. Finally on November 30,1998, I had the answer; the mystery had been solved.

I sat in the exam room with my mother at Boston Children's Hospital anxiously awaiting the doctor. I was finally going to find out why I was so tired, the unexplained fevers, the joint pain and why my fingers were turning purple. The doctor walks in and says several things, that I do not recall. The only thing she says that resonates is "you have LUPUS ". I immediately ask two questions: 1) Will I die? 2) Will I be able to have children? She says people live long lives with lupus and yes having children is possible. So I say ok, tell me about lupus.....

And thus my journey as a lupus warrior begins.

Lupus is a chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs. Essentially, your body is telling itself that tissues/organs do not belong and therefore attacks.Lupus is a very individualized disease and looks different in everyone. My 18 year lupus journey has been filled when many ups & downs. I have had many challenges including hospitalizations, chemotherapy, multiple medical procedures, hair loss, losing my own twin sister to lupus and most recently, kidney failure. I have also experienced successes - I have traveled the world, had many academic and professional achievements, and am blessed to be loved and cared for by many.

I live my life to the fullest, despite my illness. Some of my tips to be being a lupus warrior:

1) It may sound cliche, STAY Positive! Lupus is not a barrier to life, it is a hurdle that you can get over. It makes you a stronger person.

2) Communication is key. Lupus is a silent disease that people won't necessarily know you are managing unless you let them know. Let the people around you know what you are managing and allow them to support you. Do not suffer alone.

3) Stay Vigilant! As soon as something doesn't feel right, tell your doctor. Stay on top of your meds and doctors appointments.

4) Advocate! Be your number one advocate. Ask for what you need. You are the expert on you. You know your body...listen to it.

5) Live! Have fun. Do the things that make you happy. Eat, dance, laugh, travel and love!

Resources to learn more about Lupus:

Lupus Foundation of America: www.lupus.org Lupus Research Alliance: www.lupusresearchinstitute.org

You can also see people’s journey on social media using the hashtags: #lupuswarrior #lupussucks #lupusawareness #lupie

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