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A Conversation with a Butterfly: Lupus Awareness Month Exclusive

May 10, 2017

 

This past weekend, I had a conversation with a 26 year old butterfly. Daunyel Alexander is a Detroit native currently residing in Arizona, who has proven herself to be stronger than any illness.  Daunyel is both an active lupus carrier, activist and advocate for lupus awareness. Lupus is a chronic disease that is caused when the immune system attacks its own tissues. Those who suffer from lupus may experience chronic joint pain, skin rashes and extreme fatigue. Lupus also affects vital organs such as the heart, lungs and kidneys. It is known as a common disease with roughly 200,000 cases reported annually in the United State alone.  The month of May has been observed as Lupus Awareness Month. In honor of Lupus Awareness Month, The Honey Mug is proud to share this exclusive interview with Daunyel on life with lupus, it's effects and things you should know about the illness. 

 

D.S: When were you diagnosed? How did you feel? 

 

D.A: I was diagnosed in the summer of 2009 and I was scared as f*ck. I didn't know what lupus was so I googled it [even though the doctors tell you not to] and all the horror stories came up. Overall, I think I'm fine although I have my days. Now as I become older, I become more concerned about my lupus and how to minimize my symptoms. 

 

D.S: What were your symptoms early on?

 

D.A: A lot of bone pain which I now know was arthritis. I slept a lot and my mom consistently asked if I was pregnant [laughs]. I remember one day I was at dance practice and I just wasn't feeling good. My body was hurting really bad and my coach sent me home. I went to the doctor and they did an ANA test then I was referred to a rheumatoid arthritis specialist and that's when I was diagnosed. The symptoms can be very vague and mimic symptoms of other diseases so I thought it may have been just fatigue and soreness from working out.    

 

D.S: Does lupus run in your family? 

 

D.A: My mother is adopted. After locating her biological mother, (my grandmother) refused to assist us in that process so I have no way of locating medical records indicating that it is hereditary on her side. There are no records indicating that it runs on my father's side, however.

 

D.S: How does it affect your family?

 

D.A: It affects my family a lot. My mother is a nervous wreck. Everyone always thinks that every time I don't feel good, it's lupus related and I'm dying. I try not to tell my mom as much because that makes it worst sometimes. Medical bills can also be a burden. I always have out of pocket expenses to pay for. I think my boyfriend is the most calm out of everyone. 

 

D.S: What are 3 things most people don't know about lupus?

 

D.A: Not everybody's lupus is the same. The symptoms I have, you may not have; my lupus is NOT your lupus. Another fact is that you can't die from lupus itself. It is complications from lupus that cause people to die from it. Lastly, it is NOT just a disease that only affects women, although studies have shown that it affects women of color 3 times more than Caucasian women.

 

D.S: What are some things that help you cope with your illness?

 

D.A: I try to be as normal as possible. The hardest thing for me to understand is that with an illness, I have limitations. I want to do everything that everyone else can do, but sometimes I can't. I don't let it interfere with my goals and I think it could be a gift and a curse because sometimes it's best to just listen to your body.

 

D.S: What is your number one goal for those following your lupus journey?

 

D.A: I want people to know that there are everyday people that look normal and do normal things that have this illness. Many people that have awareness pages are suffering tremendously and I don't want people to think that this is how everyone with lupus is. We are normal people that may not have scars and extreme cases of lupus. I also want people to realize that life is about balance. I want to show people that I don't have to be vegan or vegetarian to live a healthy life with lupus. You can live a normal life and still work toward your goals [and remission] with lupus. 

 

For more information on lupus, Lupus Awareness Month and how you can get involved, please visit:

http://www.lupusawarenessmonth.org/

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