Lupus Stories

Jomayra’s Fight Like a Girl Story (Lupus)

Apr
22
2015
Jomayra's Story Lupus

Hello, my name is Jomayra. I'm 31 years old. My story with lupus began at the age of 25, after giving birth to my first child. I started noticing changes in my body, starting with my hands and feet. They would swell up and turn purple. My hair started falling out. I felt so weak and tired all the time. I started getting a rash on my face. I made an appointment to see the doctor and share my concerns with her and see if they could figure out what was wrong with me. My doctor at the time told me that everything was fine. I just had a baby 8 months ago, so my body was changing. She suggested I join a health club and try working out and eating better. So I started going to the gym and just felt worse. One night, while I was watching Medical Mystery on cable, there was this lady describing all my symptoms, and she was diagnosed with lupus. I wrote it down and asked my doctor to test me for it. So she did, and the test result came back positive. Not knowing what lupus was, I started doing … [Read more...]

Kate’s Fight Like a Girl Story (Autoimmune Illnesses (SLE Lupus, Vasculitis, Type 1 Diabetes, Hashimoto’s Thyroiditis))

Feb
11
2015
Purple Ribbon

This is the story of my journey with autoimmune illnesses. I was diagnosed with type one diabetes over 21 years ago, at the age of five. I adjusted fairly quickly and fairly easily to my new lifestyle, testing my blood sugar levels, moderating my diet and injecting myself with insulin four times a day. As a child, I obviously wasn't as aware of the complications of illness, of the gravity of being diagnosed with a chronic illness, of how life-changing it could be. I always thought my type one diabetes was isolated, that it was the only serious illness I'd have to deal with throughout my life, that it was something I could handle. At the time, I wasn't aware that type one diabetes is an autoimmune illness, meaning the body views its own cells as foreign invaders and attacks them. I was not aware that developing one autoimmune illness predisposes you to developing more autoimmune illnesses. If your body is susceptible to attacking itself, it doesn't take much for it to continue doing … [Read more...]

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...]