Stephanie
09-04-2009, 07:07 AM
Hi, Im stephanie im 16 and i live in London England
Well this time last year i started having really bad problems with my eyes and i couldnt wear make anymore and no-one could figure out what was wrong, they all just said i must be allergic to something, but then in about november my eyes swelled up under the lids and started bleeding, my parents freaked out we went to Moorfield Eye Hospital, in London which has an emergency department they couldnt figure out what was wrong, so they gave me steroid drops and told me to wait until the swelling had gone down until i went back,in Feburary i got a chest infection, which i get all the time, i was always off school sick so it wasnt out of the ordinary. About 3 days into the infection i started coughing up dark blood, which looked clotted and even though i get sick all the time it seemed weird so i told my mum. She said it might just be because i was coughing alot and i didnt really think much about it. A week later i was still coughing blood, but not all that much when my elbows seized into a bent position and i couldnt move them at all, i got all these nodule type boil things on my elbow joints and my parents thought it was just exema (yeah bad spelling i have no idea how to spell that..) my elbows were unbearable if i stretched them then my ankles and my knees began to become as painful, which made sitting up and down impossible because i couldnt lift myself up with my arms. The pains moved up my body and i shared my growing concerns with my parents and they said theyd get me to see a doctor, at this point i was coughing up handfuls of blood in the mornings and my neck joints had become equally as painful as everywhere else. The doctor said i needed a blood test but wouldnt have the results for a few days so i went back to school but the next day i was in so much pain i demanded to be sent home as i couldnt stand walking up and down 4 flights of stairs, it was just pyschically impossible. My GP said i had an emergency appointment at my local hospital in the childrens ward but didnt say what might be wrong, when i got there i was in my school uniform and after the doctors examined me and asked me to explain the story up until that point they admitted me onto their ward straight away. I was in my local hospital for 3 weeks, not eating, having lots of tests done and finally giving up walking and using a wheelchair. Many different diseases were brainstormed Rhemtoid arthritis and Sweet Syndrome were two i can remember but the rheumtoid specialist who was asked to see me was the person who first suspected WG though she was skeptical seeing as i was 15 she tried my bloods checking the ANCAs (is that right? i cant really remember) after telling me i most probably did have WG she said that because it was so rare in someone so young i would be transferred to a childrens hospital. So a few days later i was tranferred to Great Ormonds St Hospital for Children and a doctor there specialises in WG in young adults and children. I was there for another 2 weeks and i was finding it increasingly difficult to breath using the oxygen constantly. My parents were distraught everytime they saw me, though i didnt feel all too bad, i just watched rubbish tv everyday but i could see watching me attached to breathing machine and seeing all those different wires coming out of me really upset them, they told my mum -which she told me later- that when she came in one morning after a particularly bad night where i'd hardly been able to breath at all the doctor told her that he was 95% sure i had WG but he couldnt wait any longer to start me on treatment or i would die. That day i was started on 70mg of steroids and i had the choice to choose between MMF and Cyclophosphomide, i chose MMF and i was started on that. The steroids worked shockingly quickly and all the nodules dissappeared from my body and my eyes werent bleeding or weird. I felt better straight away, and i could walk around again. I was in hospital for another week until they said i could go home and start the steroid pills. I had blood tests every week and take my pills every day and at the end of June i was told i was in remission. I started socialising with my friends again and i went to prom with my whole year. Now i'm feeling a little weird, im having a hard time socialising with people, my doctor says im depressed and i suffer from panic attacks everytime i go out in public having to add valium to my list of drugs i take. I am fortune that i survived what was a close call but ive ended feeling like a 60 year old woman in teenagers body, it made me grow up and realise how superficial people my age are and that they talk about their lives as if they have truly suffered. It gives me a different view on life, which i cant decide if its good or not.
so thats my story :)
Well this time last year i started having really bad problems with my eyes and i couldnt wear make anymore and no-one could figure out what was wrong, they all just said i must be allergic to something, but then in about november my eyes swelled up under the lids and started bleeding, my parents freaked out we went to Moorfield Eye Hospital, in London which has an emergency department they couldnt figure out what was wrong, so they gave me steroid drops and told me to wait until the swelling had gone down until i went back,in Feburary i got a chest infection, which i get all the time, i was always off school sick so it wasnt out of the ordinary. About 3 days into the infection i started coughing up dark blood, which looked clotted and even though i get sick all the time it seemed weird so i told my mum. She said it might just be because i was coughing alot and i didnt really think much about it. A week later i was still coughing blood, but not all that much when my elbows seized into a bent position and i couldnt move them at all, i got all these nodule type boil things on my elbow joints and my parents thought it was just exema (yeah bad spelling i have no idea how to spell that..) my elbows were unbearable if i stretched them then my ankles and my knees began to become as painful, which made sitting up and down impossible because i couldnt lift myself up with my arms. The pains moved up my body and i shared my growing concerns with my parents and they said theyd get me to see a doctor, at this point i was coughing up handfuls of blood in the mornings and my neck joints had become equally as painful as everywhere else. The doctor said i needed a blood test but wouldnt have the results for a few days so i went back to school but the next day i was in so much pain i demanded to be sent home as i couldnt stand walking up and down 4 flights of stairs, it was just pyschically impossible. My GP said i had an emergency appointment at my local hospital in the childrens ward but didnt say what might be wrong, when i got there i was in my school uniform and after the doctors examined me and asked me to explain the story up until that point they admitted me onto their ward straight away. I was in my local hospital for 3 weeks, not eating, having lots of tests done and finally giving up walking and using a wheelchair. Many different diseases were brainstormed Rhemtoid arthritis and Sweet Syndrome were two i can remember but the rheumtoid specialist who was asked to see me was the person who first suspected WG though she was skeptical seeing as i was 15 she tried my bloods checking the ANCAs (is that right? i cant really remember) after telling me i most probably did have WG she said that because it was so rare in someone so young i would be transferred to a childrens hospital. So a few days later i was tranferred to Great Ormonds St Hospital for Children and a doctor there specialises in WG in young adults and children. I was there for another 2 weeks and i was finding it increasingly difficult to breath using the oxygen constantly. My parents were distraught everytime they saw me, though i didnt feel all too bad, i just watched rubbish tv everyday but i could see watching me attached to breathing machine and seeing all those different wires coming out of me really upset them, they told my mum -which she told me later- that when she came in one morning after a particularly bad night where i'd hardly been able to breath at all the doctor told her that he was 95% sure i had WG but he couldnt wait any longer to start me on treatment or i would die. That day i was started on 70mg of steroids and i had the choice to choose between MMF and Cyclophosphomide, i chose MMF and i was started on that. The steroids worked shockingly quickly and all the nodules dissappeared from my body and my eyes werent bleeding or weird. I felt better straight away, and i could walk around again. I was in hospital for another week until they said i could go home and start the steroid pills. I had blood tests every week and take my pills every day and at the end of June i was told i was in remission. I started socialising with my friends again and i went to prom with my whole year. Now i'm feeling a little weird, im having a hard time socialising with people, my doctor says im depressed and i suffer from panic attacks everytime i go out in public having to add valium to my list of drugs i take. I am fortune that i survived what was a close call but ive ended feeling like a 60 year old woman in teenagers body, it made me grow up and realise how superficial people my age are and that they talk about their lives as if they have truly suffered. It gives me a different view on life, which i cant decide if its good or not.
so thats my story :)