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Q&A Forum: Community Lupus Stories

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This week we share the personal lupus stories from our LupusCorner Q&A Forum members. We asked our community to tell us about their battle with lupus and the journey that led them to this point. 

Thank you to all our LupusCorner Q&A Forum members for sharing their stories!


ShanThom72’s Lupus Story

“My story began with bouts of chest pain and numb fingers by the age of 8. As my father was in the navy, I was seen by various doctors at military hospitals and underwent numerous tests, but without diagnosis. By high school I was also experiencing random, mass swelling of joints and broke out in the butterfly rash. It wasn’t until I was 15 years old, chronically ill with kidney involvement and unable to remain in school, and was taken to the local (civilian) urgent care center, that I was finally tested for an immune system disorder. After receiving an SLE diagnosis, I was placed on the appropriate meds, including long-term steroid therapy and was able to make it through college, begin a career, get married, and give birth to a healthy baby boy, with very few symptoms.”

Read the full story, here!


BFree’s Lupus Story

“Finding out I had Lupus wasn’t initially devastating. It answered an enormous amount of questions about my odd health issues. For instance, chicken! Why was it some months I could devour chicken no matter how it was prepared, and other months it was like eating paste and rocks?

What are these tiny blisters all over my fingers, nail bed and toes?

Why do I look like like I’m blushing all the time?

Why do I feel feverish in the late evenings, and have ridiculous migraines?

What are these odd blisters in my nose?

Why is there always ‘invisible’ proteins in my urine tests?

Why am I gaining weight?”

Read the full story, here.


My Journey’s Lupus Story

“I have always been sun sensitive, would get awful headaches, sun blisters, very ill. My mother would throw me in a cool tub, no AC remember, dry me and lay me on a couch and darken the room. I’d sleep, get chicken noodle soup and a lot to drink. Little did we know, my achy joints, bad lungs, sun blisters were all symptoms of lupus, until my brother was diagnosed with Marfans syndrome. The docs told my parents to have me checked for autoimmune.

Well we didn’t have a lot of money, that was put on hold and it took me ten years to be diagnosed at 32.”

Read the full story, here.


Male Lupus Warrior’s Lupus Story

“My name is Emmitt Henderson III, I am a Male Lupus Warrior Veteran since 1995. My story started in 1980 with Discoid Lupus that evolved to Nephritis and Systemic in 1995. In addition to Lupus and over 30 pills at a time, I was diagnosed with Sjogren’s Syndrome and Rheumatoid Arthritis. Lupus Flares were extreme, at 1 point, I was in the hospital every month, for a week, over a 1 year period.

I was on Chemo and Radiation treatments, I endured going through peritoneal dialysis till my Kidney Transplant, I suffered Heart failure, I was in a coma for over 3 weeks. Once I recovered from the coma, I went to rehab to relearn to use my limbs. From the trauma to my Heart, my Heart could not take another Flare, I went through a Bone Marrow Stem Cell Transplant (a clinical trial) procedure to slow down my Lupus Aggression. Lupus done its damage, I had Avascular Necroses that caused my Rt Knee and Lt Shoulder to be replaced, I had damages to my hips and opposite joints. I went through Restricted Lung disease, and was on oxygen for a month, I had Liver Disease, Ulcers in my Esophagus, I had to eat from a tube for over a week, I endured Liver disease, a Stroke and had my Gall Bladder removed.”

Read the full story, here.


It Helps To Think Ahead’s Lupus Story

“Like all Lupus Warriors, I am always concerned that I’ll develop a flare when I must undergo a necessary medical procedure that involves an injection of a new medication or sedation. However, I have learned that if I prepare myself, advocate for myself, and educate my family/care support team. I can prevent a flare while I can’t shorten my recovery time.

I CAN avoid a flare! I prepare myself by getting enough sleep, eating well, and exercising.”

Read the full story, here.


FS’s Lupus Story

“I was 18 when I was diagnosed with Lupus. It was a life-altering moment for me. Within a matter of days, the person that I used to be was gone and what was left behind was a broken, tired mess who didn’t know where to go on from there.
My lupus journey has been extremely difficult, not only because no one could understand what I was going through or still do but also because, in my community, autoimmune diseases are a lesser-known class of illnesses.”
Read the full story, here.

Kym H’s Lupus Story

“Diagnosised age 14 with Sjogren’s. Started with occasional blacking out due to overheating, I would have to lay down on the floor or coolest part of it. I started having sensitivity to light in my early 20’s and dry mouth, my glands would swell in my face when my body was fighting an infection. Got pregnant 2015 and had to see a fetal specialist, and the pregnancy was smooth but I was experiencing pain.”

Read the full story, here.


Want to Share Your Lupus Story?

Send us an email us at: hello@lupuscorner.com.

Stay strong Lupus Warriors! You got this!

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