Janice's Story

I was a teenager when I first noticed the symptoms. I had swollen knees, Rashes on my face, back and neck and would slip in and out of depression with erratic moods swings. I thought it was puberty! I was also experiencing recurring headaches, mouth ulcers, swollen knees and aching muscles in my arms and legs.

I felt exhausted all the time and would sleep at every opportunity. As my hair goes through periods of change I allowed for breakage etc but problems with my hair were extreme; it suddenly changed from being thick to smooth in texture, then chunks fell out. At the time I blamed it on the brand of perm relaxer I was using.

The side of my face was going darker, then the colour of my gums changed and my teeth did not appear as strong as they used to be. I realised that I was short of breath and that my menstrual cycle was irregular. The final straw was when I started to gain and lose weight frequently for no apparent reason. I tried to make sense of it all and blamed the symptoms on other things. For instance perhaps I had done too much walking that day or that my condition was due to eating too many take-aways, late nights or not getting enough sleep.

Clearly something was wrong so I decided that I should go to the GP for a check up. He said I was mad, at the age of 17! I felt distraught and confused and too ashamed to talk to anyone else as I didn't them also telling me I was exaggerating. I decided to persevere visiting my GP and eventually the hospital. Over a period of four years I had many tests including blood tests. By now I had memory loss, half of both lungs had collapsed, severe headaches/migraines and blackouts. At the age of 21 I was finally diagnosed with Systemic Lupus Erythematosus (SLE).

Since then I have developed arthritis, Raynauds disease, alopecia, nerve damage to both legs and water on the brain (cerebral lupus). As a result of my body attacking itself seven fingers were partially amputated in 2000. I have also had several periods where I have been wheelchair bound due to the severity of the attacks. I was working for 12 years for the DSS but had to cease work in 1999 due to my illness.

My mother was diagnosed with Lupus after I got my diagnosis and I have also discovered that my sister, who died of a heart attack at age 11¾, also had Lupus. I'm still suffering but in spite of everything I'm coping very well and am able to live from day to day with medication and support of family and friends. If anything the whole experience has made me more confident and outgoing, I hope to raise Lupus awareness by telling my story, it's so important that people are informed about this devastating and widespread illness.