Home disease awareness Living with Lupus: Abby Charles shares her story

Living with Lupus: Abby Charles shares her story

by healthplusthemag

Born and raised in Trinidad and Tobago, Abby Charles is a public health practitioner, fashion entrepreneur and dancer. Despite living with Lupus, a disease that causes the body’s immune system to attack  its own tissues and organs, Abby is a true warrior in mind and spirit. She is a Program Director at the Institute for Public Health Innovation (IPHI),the public health institute for Washington DC, Maryland and Virginia, providing leadership and coordination for the Community Health Worker Initiatives. She is one of IPHI’s lead trainers and provides technical assistance to organisations regionally and nationally on health and racial equity, collaboration and partnership development, community health workers, health in all policies, women’s health, and HIV. Added to such a tremendous responsibility, Abby also sits on the board of the Bishop Anstey High School Alumnae association in Washington DC. She is a graduate of the George Washington University with a Bachelor of Science in Environmental Science and a Master of Public Health in Global Health Promotion. She presently serves on the Board of The Well Project and serves as a Commissioner on the Mayor’s Advisory Commission on Caribbean Community Affairs for Washington, DC. 

Abby, a lover of carnival, travel, family and fashion is also the founder and creative director of Bene Caribe, a fashion brand born and raised in Trinbago that reflects the essence of her Trinidadian legacy and colourful Caribbean culture. As a semi-professional dancer, she can be found dancing, and dreaming of performing to her favourite Caribbean and African inspired sounds. While living with Lupus has caused her to live life more carefully to avoid having flares, Abby continues to move to the beat and let her voice be heard and her colourful spirit be seen. This is her story on living with Lupus.

Photo | Raya Charles
How long have you been living with lupus and how were you diagnosed?

I’ve been aware of living with lupus since around 2010 although my initial indication of symptoms occurred in 2008. I have a form of lupus called Lupus Panniculitis. It’s considered a rare form of chronic cutaneous (skin) lupus with tender fat nodules or plaques that develop in the fatty layer of my skin. Lupus is a disorder where your immune system mistakes your body cells for disease cells and attacks your body cells. With my form of lupus, when triggered, my immune system attacks the fat below my skin. So I had a strange lump that developed in my cheek in 2008, and it kept getting larger and larger. Initially the dermatologist I went to thought it was a cyst in my cheek, but after trying to treat it with topical steroids, she referred me for a biopsy. The biopsy showed that it was “panniculitis”. I went on a short course of steroids and the lump went down. Later in 2012, I noticed significant changes in my nose, swelling that eventually spread to my cheeks. When I went to the dermatologist they ran a lupus panel which showed that I had high antinuclear antibodies (one of the indicators of lupus). Since then I’ve been on medication to manage and modulate my immune system.  

How has lupus changed your life? 

Lupus is so unpredictable, I almost never know when I’m going to have a flare and sometimes it takes time for me to notice the nodules because they are under my skin, so I don’t see them. When they  get large it’s painful and when they go away, because the fat has been removed it is pretty debilitating.

I’ve made a number of changes in my life to try to control flares:

  1. Diet. There are a number of foods that can trigger inflammation, so I am trying to stay away from those. Some examples are dairy, alcohol is a major inflammatory trigger, garlic can trigger the immune system to act as well, gluten.
  2. Sun exposure. I’m supposed to limit my exposure to the sun. I love the sun so this is really hard to change, but I try to wear hats when I’m outside and cover my skin. (this is really hard for carnival!!)
  3. Stress. Managing stress is important, because stress can cause flare-ups of lupus as well. So I try to get lots of rest, meditate and take care of my mental health.  

My treatments for lupus suppress my immune system so that it doesn’t attack my own body, so I have to be really cautious since this can make me more susceptible to infections, and it can take longer to fight off infections or diseases as well. I’m at the doctor regularly. I go for infusions every eight weeks and have a full care team, dermatologist, rheumatologist, ophthalmologist (hydroxychloroquine one of my medications can affect the eyes after long-term use, so I have to monitor my eyes annually). 

Photo | Kasim George
What do you want people to know about lupus? 

Lupus is often misdiagnosed or undiagnosed. A lot of people don’t know they have it. Awareness about the disease is important. Lupus is also more prevalent in black women, I’m always fascinated by the number of people who know someone with lupus when I share my story. Lupus is not infectious. There is evidence of a genetic aspect to lupus, so you may find multiple family members have the disorder. There are treatments to help manage lupus, but treatments can be costly. I believe our government should invest in research on lupus and must prioritise treatment and medication availability for people with lupus. When I was in Trinidad, in 2014 – 2015, I remember having to wait weeks for hydroxychloroquine. It just wasn’t readily available at the pharmacy. I hope that has changed. We need to ensure steady drug supply for people with lupus, so that they can prevent lupus flares. Social support is also important. There are organisations such as the Voice of Lupus Foundation in Trinidad that are providing a voice to lupus warriors through advocacy, public awareness, education and caring for and improving the lives of people living with lupus. The Voice of Lupus Foundation also has patient support groups for people with lupus.

What advice do you have for women living with lupus?

Develop a support network. The unpredictability of living with lupus can be stressful. Having friends and family to support you through living with this disease is important.  Share your story with the people who matter to you so that they understand the symptoms and understand how lupus affects your life. I know a lot of people who deal with the stress of this disease in silence. My employers and colleagues know about my health concerns. that way, when I need to take a day off or a couple of days off because of my health, they have some empathy and understanding. Take care of your health as best as you can. Stress triggers this disease so your mental health matters just as much as your physical health. I really believe what we eat affects our health as well. Research and talk to your doctors about nutrition and foods that trigger and reduce inflammation. I’m always learning about living with lupus, having a support group and connections to other people with lupus is helpful to stay connected to stay motivated and to learn about advances with the disease. The Voice of Lupus Foundation and Natalie Affonso Lupus Foundation have great information. Follow them on Facebook and connect with those organisations.

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