Lupus Stories

Maryam’s Fight Like a Girl Story (Lupus)

Jan
05
2015
Purple Ribbon

Hello, my name is Maryam. I am almost 16 years old. It all started when I was 13 years old. The rash was the first sign. It was creepy, but I didn't pay much attention to it. But it grew bigger, and suddenly it was also on my face. I went to a clinic, and they said that I had an allergic reaction to strawberries. After that, it went away for a while. Then the pain began. The first 3 months, no one knew that I even felt any kind of pain, but after another 3 months, I began walking in a weird way. For 4 another months, people kept telling me that maybe I was playing too hard at school or not resting enough. 10 months, and I didn't see any doctors. Only one doctor, and she said that I might need to just rest, and it didn't work. When I finished a year in pain, I felt that it was something really serious. So I told my parents that there was something wrong with me. We went to all kinds of doctors, and they all said that there was nothing wrong with me. A few of them said that it was … [Read more...]

Halle’s Fight Like a Girl Story (Systemic Lupus Erythematosus, Hemolytic Anemia)

Jan
05
2015
image1

Like many, my story begins with a series of symptoms that could be linked to a handful of average ailments: fatigue, body aches, swelling, and the occasional purple hands and feet. At 12 years old, your first instinct isn't that you may be suffering from what would become a lifelong battle for your health, but rather just a passing "bug" that could easily be fixed with a simple antibiotic. It was the beginning of my 7th grade year, and being the social butterfly that I was, it was chalked up by family doctor as a severe case of mono. Although I had tested negative several times, my whole field hockey team was dropping like flies, so I was treated accordingly. And in a week's time, I had begun to feel somewhat human again. I continued my social life and maintained a steady/normal-paced lifestyle for a few weeks more until the same debilitating symptoms hit me again, this time twice as bad as before. I had noticed that the tone of my skin had changed from its usual porcelain glow into an … [Read more...]

Alice’s Fight Like a Girl Story (Lupus Nephritis, Stage 4)

Dec
22
2014
Alice's Story Lupus Nephritis

Hi everyone, I'm Alice, and I am 16 years old. I was diagnosed at 13, halfway through my first year at high school. I had gone to the beach for a week prior to diagnosis and thought that my fatigue was due to the swimming and late nights with my family. Suddenly, my eyes started swelling. and I assumed it was just a minor side effect from lack of sleep. I was sadly mistaken when I was taken to hospital when my ankles became bigger than my calves! I had no joint pain or rash, but they diagnosed me within a few days, which I've heard is quite rare (correct me if I'm wrong :)). I was sent to a hospital hours away from where I lived and had to fly in a tiny plane with just a doctor and my mum and a pilot. I vomited the whole flight there and was admitted for 2 weeks. I had a kidney biopsy and began to start taking my 27 pills a day. :( After a lot of chemotherapy, albumin infusions, hospitalisation and more, I recovered. I gained 15 kilos as a result of my meds, and as I was previously … [Read more...]

Mae’s Fight Like a Girl Story (Lupus)

Nov
10
2014
Purple Ribbon

I go by Mae. I was 11 in middle school. One day, I was doing a backstroke when suddenly the concrete step in the pool cut me. I love swimming and playing tennis, so getting a cut wasn't a big deal in my thoughts. It was just a cut. I didn't think much of it and washed it off later. Then the rashes started forming around my cut. I put on some cream and still didn't think much of it. Then the rashes and splotches started creeping up my arm and appearing on my legs. A week went by, and I saw a few pimples forming on my cheeks. Oh, it was probably just from the stress that everyone gets. A few days later, it became what is known as the butterfly rash. It was far from being pretty like a butterfly. My parents, worried, took me to the doctor, and after a few visits, had me take the ANA test. It came back positive. Could it have been drug-induced? I was taking other medication to fight my epilepsy, so it was a possibility. Under close monitoring, I was officially diagnosed. It was lupus. I … [Read more...]

Nafz’s Fight Like a Girl Story (Lupus/SLE)

Sep
29
2014
Purple Ribbon

Hello! I'm Nafz, 22 years old. I was diagnosed with Lupus when I was 14 years old, in my 2nd year of high school. I was able to see a lot of doctors, but they could not tell me what I had. One day, I was rushed to the hospital, due to on-and-off fever, joint pains, anemia, hair loss, and many other problems. I was admitted for about 7 days. I learned what I had after 1 month from the date of my admission. My family and my doctor decided not to tell me right away to let me achieve full recovery. When I found out, I felt like my heart was breaking, and I didn't know what to do or how to live this kind of life or how to be brave enough to face everything. I never stopped dreaming. They wanted me to stop going to school, but I would prove to them that I could handle studying and taking care of myself. During my college years, I felt like I didn't have any illness at all. I thought I was living like a normal person. But my last year in college was the most unforgettable year I had ever … [Read more...]

Keirstyn’s Fight Like a Girl Story (Lupus)

Sep
25
2014
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My name is Keirstyn. I'm 18 years old, soon to be 19. I'm in college, have a wonderful job, boyfriend, family, and friends. But I feel I can't enjoy life like an 18-year-old should. I have not been officially diagnosed with lupus, however my symptoms all point to it. When I was 13 I started having ankle and knee pain, thinking it was just because I had been dancing for so long my joints were suffering. I went to an orthopedic doctor for tests, only to be told that I was fine and I was basically imagining it all. Then when I was 16, I lost both my grandmothers to cancer within 5 months of each other, and then my aunt shortly after my 17th birthday. I started feeling extremely fatigued around this time. I played it off as depression. But I started having pain in my toes, my fingers, my wrists, my back, hips, basically every joint in my body. Sometimes I would be in so much pain that I couldn't write or do daily activities. My mom took me to my doctor for the millionth time, only to … [Read more...]

Rachel’s Fight Like a Girl Story (Lupus)

Sep
15
2014
Purple Ribbon

Where do I start? Well first, I have not been officially diagnosed with lupus. My symptoms started when I was about 15 years old, and I am now a 27 year old mother and wife. At 15, my knees would start popping every time I moved. It was uncomfortable but not unbearable. I went to physical therapy, and they could not figure out what was wrong. I was told that it was all in my head. That was the first and not the last time I heard from doctors or physicians that this is all in my head. Fast forward to me joining the Air Force. I was tired all the time and seemed to be sick all the time. I had my son at 20, and that was when my life started to crash down and continues to crash. It started with severe muscle spasms where I would feel paralyzed for a good 30 seconds. After tests and MRI's, there was nothing wrong. My daughter was born when I was 22 years old. That November I would start running high fevers of 104, 105, etc. I had my butterfly rash. I thought I overcame it when January … [Read more...]

Danielle’s Fight Like a Girl Story (Lupus SLE)

Jul
30
2014
Lupus

I am in the process of being diagnosed with Lupus. At the age of 18, I awoke one morning with almost complete loss of vision in my left eye. I went from having 20/20 vision to having barely any at all;  this was not a gradual loss, this literally happened over night.  Of course, my first instinct was to go to the doctor. They took one look at me and told me to go to the optometrist, who refused to see me due to the condition of my eye and told me to go right to the emergency room. This is where my nightmare began.  I was seen by a doctor and was told I was suffering from optic neuritis ( I had never heard of this and, of course, thought the worst).  I was sent for an emergency MRI, as this condition is one of the biggest symptoms of MS.  Nothing showed up in the MRI, so I was sent home on an IV with a high dosage of steroids.  This was only the beginning of all of my symptoms. For three years after the first onset of optic neuritis, I suffered with it reoccurring in both eyes … [Read more...]

Emily’s Fight Like a Girl Story (Lupus)

May
23
2014
Purple Ribbon

My family, my friends, doctors, and even strangers, they have all seen my pain. I questioned the other day how many of them actually know what it's like to live with Lupus. I thought about it and in all honesty, I don't expect anyone to know what it's like, I don't think anyone can understand what it's like unless that is, you are actually living with it. But I also questioned, how many of the people that see my pain actually know where it's coming from, if they even know what Lupus is. So I asked. I asked my mom first, and she knew exactly what it was - an autoimmune disease, that instead of your immune system helping your body, it attacks it. Other answers varied from it's a type of cancer to it's just a disease. My definition of Lupus is much more than theirs. You see, let me take you into my reality. My diagnosis was in March 2009. I was in fifth grade. I didn't care when I found out, mainly because I did not have the slightest clue of what Lupus was. I don't remember much of … [Read more...]

Kamyiah’s Fight Like a Girl Story (Lupus)

May
21
2014
Kamyiah's Story (Lupus)

Hey my ladies ! I am Kamyiah Blackmon and I am 15 years old. I found out I had lupus in late November of 2013. I remember (before finding out I had lupus) having inflammation in my joints all the time and they were stiff ALL THE TIME (I remember being in the grocery store with my mom and I would have problems bending down and getting things for her and my knees would be cracking)!! It was also very hard for me to breathe, I couldn't walk a half a block without breathing complications. I was also not so fun to be around because all I wanted to do was lay around and sleep (fatigue was also a huge factor) and people didn't understand my situation. I was sore all the time. It was very hard for me to move around, be happy, and focus. I even took days off of school because my lupus flare ups were so bad. Physically I wanted to give up and just sleep my life away but mentally I wouldn't let myself do that because I knew I had dreams and goals that I wanted to pursue in life. There were … [Read more...]