Gwen from Cardiff, UK, was
first diagnosed with Wegener's
when she was just 14 years old...
"I first found out I had Wegeners in 1995. I had been basically well and healthy all my life, until one day in May. I remember going into town to meet some friends and to go shopping, but I couldn't stop coughing or breathe properly. I felt really ill very suddenly, and when I got home I went straight to bed with what I thought was flu.
Over the next few days, I could hardly move from bed and I found it increasingly difficult to breathe. My parents called the doctor out, and I was diagnosed with Pneumonia and some anti-biotics. However, it soon became clear that the medication wasn't working and I was getting more seriously ill by the minute.
I was admitted to the hospital, and soon taken down to theatre to have a lung biopsy. The next thing I remember was waking up 3 weeks later in Intensive Care, surrounded by doctors and nurses and my worried parents!
My lungs had collapsed, and my kidneys had started to fail. I had undergone plasmafaresis, and sedated and ventalated while the immunosuppresants took effect. I was seriously ill, and had even been given the last rites as I wasn't expected to make it.
Over the next few weeks and months I made a slow recovery, and I even went back to school and took my exams. I was told a relapse would be extremely rare.
About a year later, and when I stopped taking my immuno suppresants, I started to experience breathing difficulties again. I became short of breath, and was wheezing and coughing all the time. I could barely climb the stairs, or walk any distance without becoming severely breathless. My doctor thought I had asthma, but it was later discovered that I had a Tracheal Stenosis, which is a common complication of Wegeners. I had an emergency dilatation to open up my airway, and I have subsequent dilatations every 15 - 17 weeks to keep my trachea open.
I had a baby 2 years ago, and became seriously ill with pre eclampsia and high blood pressure - which i'm told it not unusual with Wegener's even when in remission.
I had another baby last year, and suffered with hypertension again and then had a flare up after giving birth. I started to lose my vision, and had very bad aching joints. Luckily, i'm almost in remission again now having finished my latest course of Biological therapy (Ritixumab).
