Apoyo a la investigación, la educación y la promoción del lupus
Nyobie Gordon-Ricks
Fundador de Butterfly Warriors
Una pasión por la atención médica y la defensa del paciente.
Con compasión, conocimiento y resiliencia, como guerrera del lupus y embajadora de la Lupus Foundation of America, dedica su tiempo a crear conciencia y apoyar a los afectados por la misteriosa enfermedad llamada lupus.
Nyobie es esposa y madre de dos hijos. Cuando necesita un descanso, la encontrará hundida en las páginas de un buen libro.
Mi historia de lupus
As a lupus patient, I know firsthand the profound impact this disease has on not only those of us living with lupus but also on the family members who support us.
My journey began at age 12, I endured countless Dr. visits, misdiagnosis, being ignored, disregarded, labeled lazy and told I was faking my symptoms. After 19 years for suffering and doing things on my own I was diagnosed with Lupus SLE in 2010, followed by Lupus Nephritis in 2011, Lupus Cerebritis in 2012, and Fibromyalgia in 2015.
These were incredibly challenging times for my family and I. Weak, depressed, confused, and in immense pain, I struggled to care for myself, and my family. I felt like I was failing at being who they needed me to be.
This was life changing! How would this affect our lives moving forward?
We had to educate ourselves about lupus and make significant lifestyle changes to adapt. But together, we learned how to live with lupus and FIGHT TO BEAT IT!
Today, I have my good days and "flare" days, but I've found a routine that works for me. I refuse to let this disease control my life. Despite the heavy rain and strong winds brought by Hurricane Lupus, I stand ready for battle, with my family by my side even when I'm "lupus crazy."
To anyone else facing this battle: YOU ARE NOT ALONE. There are people who understand and empathize with your struggle. You need not feel ashamed or embarrassed—YOU ARE SICK AND IT IS NOT YOUR FAULT!
As a Lupus Advocate, Ambassador, and Warrior I am committed to being a voice for the voiceless by advocating for better healthcare, education, and advanced testing for a quicker and accurate diagnosis. Helping others navigate the challenges of living with lupus, spreading awareness, finding support and raising funds for a cure are crucial to bringing us one step closer to a world without lupus.
If you need to talk, please message me. Know you have an ally.