In 2014, KUSI Consulting and threesixtyGh participated for the first time in the 10k run at the Accra International Marathon (AIM) to help raise awareness for Lupus, a disease known as “the silent killer”. On Sunday, 27th September 2015 and 30th October 2016 we again ran to raise awareness for the autoimmune disease.
We want to take a moment to educate you on Lupus.
Lupus is a chronic autoimmune disease which occurs when one’s body attacks and damages its own cells and tissues. This inflammatory disease has the likelihood to affect any part of the body with no two cases of lupus ever being alike. Butterfly Walkers Inc. is a non-profit organization that is committed to increasing the awareness of Lupus by improving the quality of life for patients (and their families) through education and support services. CEO Judith Mills founded Butterfly Walkers, Inc. in 2003. We interviewed her about her advocacy and how she battles daily with Lupus.
What is lupus?
Lupus is an autoimmune illness where your body attacks itself. It is not contagious. In lupus, something in the body goes wrong and causes the immune system (which helps fight off bacteria, viruses and germs in the body) to attack your own healthy cells and tissue. In a nutshell, your body becomes allergic to itself so essentially you become at war with your own body. There is no cure for lupus just a cocktail of medications to treat it – So it’s more or less “trial and error”. Lupus is not the same for everyone. Even though people can share similar symptoms, it affects every individual differently. Researchers still don’t know what causes lupus. They believe it’s environmental, and genetics can play a role too.
What symptoms of lupus did you experience prior to your diagnosis?
I experienced reoccurring injuries of hip flexors which I attributed to running in track prior to my diagnosis, then, high fevers, Raynaud’s syndrome, extreme fatigue, anemia, joint pains, and hair loss.
How has your life changed since your diagnosis?
Lupus has changed my life immensely. Every day I wake up lupus is a constant reminder of the things I can’t do. I was an athlete and loved dancing but now my mobility is limited which has affected my daily activity. My immune system is lowered by the medication I take. I have to be cautious about germs and being in an environment where I can get an infection. This alone affects my relationship with people because they don’t understand and get offended by that. I feel family and friends are the worst at helping you cope. A lot of people don’t understand and assume that it’s laziness or it’s all in your head. I have moments where I don’t want to be bothered by anyone and prefer to spend time by myself to reflect. No one can help you with what you’re going through and sometimes talking about it can feel repetitious.
What inspired you to start the Butterfly Walkers, Inc (BWAHL)?
When I turned 18 years old, I was no longer qualified to have state insurance in 1999 or my mom’s health insurance. I watched my mom pay for my medical bills and medications. I contacted the Lupus Foundation of America to get assistance but they offered support groups which were not what I needed. I needed resources and help. During many years advocating and being an avid volunteer for both Lupus Foundation of America (New Jersey chapter) and also the Alliance for Lupus Research playing roles on their committee, I met more patients who needed help with paying for medications and resources which is why I decided to start Butterfly Walkers Incorporated. Butterfly Walkers Incorporated links patients to governmental resources that provide assistance with their medical bills. I decided it was imperative to start my own nonprofit organization to advocate, create awareness, and educate others about the importance of the disease.
The misconception people have about lupus are that you can’t have children, that lupus is contagious, lupus is the same for everyone, everyone with lupus breaks out with rashes all over their bodies, everyone loses their hair, it can only happen to women.
Has a background in Biomedical Sciences played any factor in the work that you do with the organization (BWAHL)?
Having a background in Biomedical Sciences and health studies help me to communicate better with my doctors and get more involved with my treatment options and clinical trials. I encourage patients to also do the same and not be afraid to ask questions. I consult them about their rights if they don’t have insurance because you get treated badly when you don’t have insurance. I also educate them on how to fight their insurance companies to approve for treatments that they denied.
What advice do you give to others battling with lupus?
The advice that I would give to other lupus patients is that they shouldn’t put all their trust in the doctor. Yes, doctors are here to help, but they make mistakes; they’re human. Drug treatment for us is trial and error. Do not stop taking any drug cold turkey; it can cause a bad reaction. If the medication is not making you feel good, don’t be afraid to tell your doctor that you want to change the medicine. They should learn about their own body. Make better food choices so they know when something is going wrong with their body. Most medical doctors don’t believe in foods that can heal, rather, they believe in just taking pharmaceutical drugs for the rest of your life. Our bodies are so unique that it talks to us in many ways. Whenever you eat something that your body doesn’t like, your body reacts telling you not to eat it. Another option is to try conventional, homoeopathic medicine. Look to see if there are any clinical trials that you may benefit from. Seek second and third opinions. Take control of your own health. Last but not least, educate yourself about your illness.
I received messages from social media that there were others suffering from lupus in Ghana and also other parts of the African continent. Some of the concerns were that they were not being educated after being diagnosed with the disease. Finding the right medicine is generally scarce and expensive. Being a native of Ghana but raised in the United States, I decided to set up the Alliance of Hope for Lupus in Ghana. Through this outlet, I’ve continued to provide education and work with pharmaceutical companies to donate medicine. I am committed to raising awareness about Lupus in Ghana. Living with Lupus, I do understand the importance of advocating awareness and also educating others on early signs to look out for with regards to diagnosis. Earlier this year, I travelled to Ghana, West Africa to continue the fight against Lupus. This was in the midst of the Ebola scare that was at the time ravaging parts of West African. In Ghana, I visited Ruesolute an autoimmune support group founded by rheumatologist Dr. Dzifa Dey at the Korle Bu hospital. I shared my journey with the group members there. I also had a few radio appearances at Obonu Fm and Uniiq Fm hosted by Nii Saban to promote awareness. I met Dr. William Ankobiah Founder of Bemuah Royal Hospital during an interview on JoyFm’s ultimate health show (by Norte Dua). Dr. Ankobiah also joined me on the GTV breakfast show to create more awareness because he knows the severity of the illness. Professor Edmund Delle, Chief Physician and Dermatologist of Rabito clinic whom I met previously has also partnered up with me and that union has been essential and helped in bringing attention to Lupus.
How can people get involved?
People can get involved by donating towards research, volunteering, educating others about lupus to create awareness so that we can get the funds for research leading towards a cure. To learn more about the Butterfly Walkers, Inc, and the services they provide and to stay updated on Lupus awareness, visit: http://www.bwahl.org/
Support the fight against Lupus by visiting here.
You can also click here to support the 2017 Accra International Marathon (AIM) and race on behalf of Lupus. If you are not able to race with us please make a generous donation.