Contrary to popular opinion, Lupus can be fatal. Many times the cause of death is not listed as lupus, but the condition such as stroke, heart attack, pneumonia, kidney failure or seizure was caused by a complication of lupus.
This is your 28th Butterfly of Hope.We need awareness! We need a cure!Encourage everyone you know to let it FLY!
Once you are diagnosed with lupus your life will change. It doesn’t mean it changes for the worse, but it will just change. Things that used to mean so much, will be replaced with things that you need to survive. People that used to take up so much of your time with nonsense, will be replaced with people that work to give your life meaning. The simple things in life will become the best things you’ve ever seen and life as you know it will be filled with special moments in pain that become the best times in your life to grow stronger. Life after a Lupus diagnosis will change, but it doesn’t mean it changes for the worse. Make it your duty to take every moment for what it is. Get up after you’re knocked down, wipe yourself off and begin again. You have changed and it’s okay. Your life still has meaning and purpose in your change. #LupusInColor
Flight of the Butterflies, Butterflies of Hope Warrior Stories is a lupus awareness campaign sharing stories of the brave lupus warriors. Many don’t understand lupus until they hear the walk of a warrior. Flight of the Butterflies, Butterflies of Hope Warrior Stories is dedicated to sharing those stories in May for lupus awareness month.
Flight of the Butterfly Alyshia Merchant
Alyshia Merchant fell suddenly ill in the summer of 2012, at the age of 23. She began having extreme fatigue, body aches, joint pain, and excruciating headaches all in a matter of days. Shortly after, she began having more visible complications, such as rashes on her face, hair loss, and swollen puffy eyes. Constant visits to the ER over the course of three months revealed no clue as to what was going on with her body. It was only when she began having serious life threatening symptoms such as high fevers, vomiting, swelling in her feet and legs, and blackouts, that she was finally hospitalized. After several long days of testing, and a kidney biopsy, in October of 2012, she tested positive for SLE Lupus Nephritis. From that day on, Alyshia’s life was never the same.
The first thing that Alyshia tried to do, was find support in her community. She felt that if she could just talk to someone who had been through what she was going through, that it would encourage her, and help her get through. However, she found absolutely nothing. Despite the treatment plan that Alyshia was placed on, Lupus remained fully active, and wrecked havoc on her life for a year and a half. Lupus had caused her to lose most of her hair, she carried around 40 lbs of painful edema, or fluid, in her feet and legs, skin rashes, and a swollen round face from the high dosages of steroids prescribed to suppress her immune system. For the first time in Alyshia’s life, she was insecure, and she was alone.
In January of 2014, lupus caused her to go into acute kidney failure. After six long months of chemotherapy, she finally began walking on her path to recovery. She then decided that she never wanted anyone in her community, or in the world, to go through what she went through alone. In 2015, she created the organization, Making Lupus Look Good.
MLLG is dedicated to empowering women that are suffering silently with the many insecurities that the lupus battle may bring. The MLLG mission is to restore the confidence in these women that lupus has stolen from them, by providing them with a full glam experience including makeovers, wigs for hair loss, skin care, etc, and full photoshoots at no cost to the patient whatsoever. The purpose of the makeovers is to remind these women of the beauty that God has given them, despite the many insecurities that lupus may throw their way. In July of 2015, MLLG partnered with The Lupus Foundation Of America, and created the first ever Lupus Awareness Event in Roanoke, Virginia. In March of 2016, Alyshia received the UBU Honors “Event Of The Year Award.” In February of 2017, Alyshia received the C.C Williams Community Service Award from the Urban Professional League, along with the “You Are A Star In The Star City” award by Mayor Sherman Lee. In October of 2017, Alyshia became certified as a Chronic Disease Self-Management leader through Stanford University. With this, she leads workshops in the community, to help others living with Chronic Illnesses learn to better cope with, and maintain control over their illnesses. In 2019, she created The Survivor’s Circle, the first lupus support group in her community in over a decade. And in 2020, she became one of thirteen people chosen across the country to be a Team Of Advisors Member for PatientsLikeMe, the world’s largest personalized health network. Since Alyshia’s lupus diagnosis, she has also been diagnosed with Pseudo Tumor Ceribri, a rare neurological condition caused by lupus, that mimics the symptoms of a brain tumor. Although she has learned to better manage her illnesses over the years, she still battles much pain and insecurities every single day. Which is why her God given passion is to bring as much awareness as she can to lupus and invisible illnesses, and to let lupus warriors across the world know that they aren’t alone in this battle, and that she is fighting with them.
Lupus In Color is excited to present Alyshia Merchant’s story to the world. As a Lupus Warrior she is actively promoting lupus awareness and wearing the armor of strength in doing so.
Lupus In Color Salutes you Alyshia Merchant . YOU ARE BRAVE, COURAGEOUS, AMAZING and STRONG TO SHARE YOUR STORY.YOUR BUTTERFLY WINGS ARE FLUTTERING, YOUR CHIN IS UP, YOUR ARMS ARE EXTENDED AND YOUR CHEST IS OUT! FLY ON BUTTERFLY!FLY ON!
PLEASE SHARE Alyshia Merchant’s FLIGHT ON YOUR SOCIAL MEDIA PAGES AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!
Butterflies of Hope – Flight of the Butterflies Spreading Lupus Awareness One Butterfly at a time Let this butterfly flutter all over cyberspace!
May 27th Lupus Fact
As with other diseases in which the spectrum of symptoms varies widely, the treatment team must be designed for each individual case of lupus. A dermatologist will be involved if skin lesions are present; a neurologist , if cognitive loss is a possibility; a nephrologist will monitor kidney function; and a rheumatologist is often involved because of the frequency of joint pain. Other specialists will be needed depending on what organ systems are affected.
This is your 27th Butterfly of Hope.We need awareness! We need a cure!Encourage everyone you know to let it FLY!
Flight of the Butterflies, Butterflies of Hope Warrior Stories is a lupus awareness campaign sharing stories of the brave lupus warriors. Many don’t understand lupus until they hear the walk of a warrior. Flight of the Butterflies, Butterflies of Hope Warrior Stories is dedicated to sharing those stories in May for lupus awareness month.
My name is Leila Muxinga and I was diagnosed with Lupus at the age of 14 and this is my story.
Back before I got diagnosed, I was misdiagnosed for about 2 years by a doctor who passed on a while ago, he was our family doctor. Later on I got referred to my current physician, who is a Specialist Dr. Goagoseb and he officially diagnosed me with SLE in 2010.
I went through a lot of bullying. I was bullied by the very same people whom I thought were my friends and best friends.
I was bullied for how my fingers were shaped, how they were blue/purple, how I would be in and out of the hospital. They talked about how nasty they thought I was.
But to my high school friends, the true friends , Ralitza Gawises, Bernelee Kahiiko and Trisha Skrywer, I just want to use this opportunity to thank you guys. I love you all still today.
So to make things short, I have been living with Lupus for over 13 years. I am legally disabled, but I have my own company and I am my own BOSS. I just want to thank the all mighty, my King in Heaven and His one and only begotten Son Jesus Christ for His mercy and His grace. Without Him, I wouldn’t have Hope.
Today I have my own Lupus Support group on WhatsApp and also a Christian group whereby I plan on motivating the young people.
This is my Story
Lupus In Color is excited to present Leila Muxinga’s story to the world. As a Lupus Warrior she is actively promoting lupus awareness and wearing the armor of strength in doing so.Lupus In Color Salutes you Leila Muxinga. YOU ARE BRAVE, COURAGEOUS, AMAZING and STRONG TO SHARE YOUR STORY.
YOUR BUTTERFLY WINGS ARE FLUTTERING, YOUR CHIN IS UP, YOUR ARMS ARE EXTENDED AND YOUR CHEST IS OUT! FLY ON BUTTERFLY!FLY ON! PLEASE SHARE Leila Muxinga’s FLIGHT ON YOUR SOCIAL MEDIA PAGES AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!
Tuesday Take that Lupus! Lupus In Color 8th Annual Faces Of Lupus
Social Media Lupus Awareness Campaign
Lupus affects individuals of virtually every age, race, ethnic background and socioeconomic status. Often, you can look at a Lupus Warrior and never know they are fighting a tremendously hard battle daily. It’s important to see the faces that can bear the pain within without showing it to everyone who they come in contact with without.
These are the Faces of Lupus from every walk of life fighting the same battle. Supporting one another in the battle for their lives.
These are the Faces of Lupus, they are brave, courageous and strong!
Lupus Awareness Month Lupus Warrior Tips 31 Days of quick tips to help lupus warriors navigate through their lupus life. #LupusEmpowerment #LupusTips #LupusInColor #Day26
Butterflies of Hope – Flight of the Butterflies Spreading Lupus Awareness One Butterfly at a time Let this butterfly flutter all over cyberspace!
May 26th Lupus Fact
Lupus Awareness Month Fact 26
Sometimes, lupus warriors can experience the whole range of clinical symptoms and laboratory findings of two well-defined autoimmune diseases at the same time—even those that are not part of one or the other disease. When this happens, they are said to have overlap syndrome. Overlapping autoimmune disease is common in SLE diagnosis. There are some common diseases associated with lupus, they include but are not limited to: Scleroderma, Rheumatoid Arthritis, Mixed Connective Tissue Disease, Raynaud’s Syndrome, Sjogren’s Syndrome, Autoimmune thyroid disease, Celiac disease, Myasthenia gravis, Antiphospholipid syndrome, Polymyositis, Dermatomyositis and Fibromyalgia.
Inaugural Butterfly Salute to Service Highlighting different Lupus Organizations that are making a difference in the lives of lupus warriors and those who support them.
Our first recipient is The Jordan D. Savage Foundation, Inc. The Jordan D. Savage Foundation, Inc. is a community service organization that is dedicated to honoring and celebrating the life of Jordan D. Savage by raising funds to provide support to the high school and youth sports programs in our community. Jordan was a passionate and loyal athlete and teammate. We can think of no better way of memorializing his life than to perform services and raise funds to allow young athletes to play, enjoy and excel in the sport of their choice. We also support the programs of the Lupus Foundation of Georgia and seek to help improve the quality of life for persons living with Lupus.
Lupus In Color Salutes the service of THE JORDAN D. SAVAGE FOUNDATION, INC. Your passion and purpose is amazing in the lupus community. Thank You for your service.
