Affected by Lupus, Yet Determined to Make a Change: A Lupus Patient’s Story of Courage and Grit.

I was born in Ghana and came to America at the age of 10. The transition from Ghana to America was hard however, I experienced culture shock and hated the winters, but  I was able adapt to it.  I had to make New Jersey my home for the sake of a better education. As they say, it's the land of opportunity.  So I grabbed onto those opportunities and was  extremely active. 

I went from running track to performing modern dance.  I was even a finalist on the Miss Teen New Jersey State Pageant.  Unfortunately I couldn’t compete for the crown that year because my life had taken a sudden change. 

I was too ill and my doctors didn’t know what was wrong with me. I saw my life flash before my eyes. I couldn’t even walk and had to be carried. I went from running track and field to a wheel chair. After two years, my doctors were finally able to figure it out. 

Lupus. 

That one word had changed my life.  I was diagnosed at the age of 17.  I had no idea what Lupus was so I took books and went on the web.  What I found scared me. Lupus is an auto-immune disease meaning your body is attacking its own tissues. Your own immune system becomes too strong that the over activity causes you become allergic to your own body. It causes debilitating joint pains, fatigue, and other painful symptoms. Lupus is very complex to diagnose because its
symptoms includes chest pain, particularly when breathing deeply, loss of hair, unexplained fever, swollen legs and eyes, mouth and nose, ulcers, fatigue and swollen glands. The symptoms of this condition may appear for some time and then disappear. You don’t have to be born with the disease; it can just happen to anyone, man or woman.

Lupus ranks with other diseases such as Multiple Sclerosis and Sickle Cell Anemia as a serious world health problem amongst other chronic illness. Lupus is a world-wide problem. Lupus attacks more women of African descent than other ethnic groups. Nephritis is common in Africans suffering with Lupus and is the only independent predictor of a poor outcome. Lupus is not a communicable disease, meaning it cannot spread from one person to another.

The exact cause of lupus is unknown. It also has no cure, however research has discovered that stress, environmental factors, including exposure to sunlight and ultraviolet light (photosensitivity), taking certain medications, genetics or heredity are common factors in determining a person propensity for developing Lupus. If so, you may be predisposed to lupus.

Even a family history of Lupus does not mean an individual will get Lupus, only that he/she is more susceptible.I have faced many challenges living with Lupus. Sometimes drugs such as
steroids, immunosuppressant’s, and chemotherapy, used to treat the disease
is as bad as the disease itself. I became my own advocate in an effort to educate and inspire people living with the chronic illness. I organized a team of walkers on the college compass of Montclair State University to walk for the Lupus Foundation of America and they featured me in the two articles. Then I later on joined the ALR (Alliance for Lupus research and formed another
team called The Butterfly Walkers.)

I am currently a graduate student at UMDNJ pursuing a master’s degree in biomedical science. My goal is to spread awareness around the world to help others living and suffering with the disease without knowing and not getting proper care. I want to turn their tears into joy because I truly believe there is hope for Lupus sufferers. We can live a productive life and not let the disease ruin their lives. I advocate through public speaking and giving motivational speeches about living with Lupus at the kick-off events for the walks. I am also a part of the ALR committee chair for entertainment and publicity.

The ALR is an organization created by Woody Johnson IV, grandson of the founder of Johnson & Johnson products. His daughter, Jamie, suffers from the disease so he made it his mission to find a cure. Our sponsors and supporters includes the NFL's New York Jets, Johnson & Johnson, Robert Wood Johnson Hospital, and Atlantic Health, to name a few, are involved in the fight for Lupus. 

Lady Gaga is our new advocate for Lupus at the ALR. The ALR Walk with Us to Cure Lupus Walkathon is a national event that changes lives and brings people together in the quest to end the suffering caused by Lupus. Many celebrities past and present also have the disease, including
Michael Jackson, rapper Snoop Dogg's daughter, Toni Braxton, Mercedes Yvette,
Seal, Trick Daddy, Anna Nicole Smith, and Tim Raines.

Lupus is in Africa and is being misdiagnosed and not treated properly. It’s an urgent health matter, I am an advocate here in America and i want to get Africans attention on the disease. Prevalence of Lupus in Africa is not rare. There is not accurate statistics of Lupus in the continent of Africa.
Few research studies have been made in South African which showed devastating results according to the Oxford Journal of Rheumatology.