Im new and this is my story..

[Stephanie]

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

[Sangye]

You really went through the ringer, Stephanie! That's a long time to get it diagnosed and start treatment, especially when you had pretty classic symptoms. Can you see me wagging a "Shame on you" finger at those doctors?

I'm glad someone did finally get it right, and that the drugs worked well. I'm trying to get the dates right-- you got diagnosed in April '08 and in June '09 you were declared in remission? That's just awesome.

What you've learned about life is extremely valuable. You'll see as you grow older. Already you're less likely to get caught up in garbage and dramas based on nothing. You'll never take your health for granted and that is a rare blessing, because you'll value every day. The old woman who hijacked your body will leave as you get stronger and stronger with time-- don't worry.

I was in the Peace Corps in my early 20's. Living in a Third World country changed me forever-- in some ways just like Wegs has done for you. I never fully fit in with my peers again, until I found peers who'd seen and experienced terrible hardship, too. We could communicate without words.

[Cindy M]

Stephanie I cannot believe what you went through. Thankfully everything turned out okay. I'm glad they finally got you on the right medication. Just continue plugging on and you will become a stronger better person. I also suffer from panic attacks and have for about 25 years, for me it did get better. I still take medication to help control them. It's just one more thing we have to deal with.

[Doug]

It is difficult finding common ground with others who've not had life experiences as drastic as ours, yet that difference can open doors of unimaginable richness if you let it.

I speak specifically of help to others, such as sharing your knowledge with others in your age group on this forum who've not made the adjustment into maturity you did of the lessons you've learned, and how you adjust to the world around you.

In my instance, I was caregiver for my elderly parents. My WG experience helped me deal with impatience with them as they grew more dependent on wheelchairs or walkers, for example, because I had to use those tools and adjust to what that meant to me: before WG, I didn't get it; after WG, I know what it was like from personal experience.

[Stephanie]

thank you everyone, your all so kind
going through all this has definately helped me become alot more understanding of my mum who has MS and generally alot more appreciative of my parents.

[Sangye]

Stephanie, I had you in mind the other day. A friend was describing how her son (young adult) takes life for granted and doesn't understand what it's like to live with limitations, etc.... She was really hard on him for it. I thought of you and your peers-- how they're probably exactly like him. (Not to mention a lot of older people who haven't experienced physical hardship) I explained that it just isn't something you can learn vicariously. I used you (anonymously of course!) as an example, and I think she got it.

[Stephanie]

haha, i dont think ive ever been used as an example like that before
i hope she benefits from my story

[brian willman]

Hi Stephanie

You tell a very moving story.

Good luck with everything. Life is beautiful whatever happens.

Brian

[jola57]

Dear Stephanie, how sad to be ill at such an early age, yet you seem to deal with it like an old pro. Yes it does change your outlook and for the better but don't let it take away your carefree days of growing up. Use your newfound wisdom for getting involved in your community maybe by being an ambasador for Wegs. How are you doing now, are you home or furthering your studies.

[Martin Thomas]

Hi Stephanie

Thanks for sharing your story and I hope you continue to strive towards a new, improved life with each day. Sadly you're not alone in having WG outside the classical age range and maybe it's time the generalisations were erased from the information sites? After all vasculitis diseases in themselves are so varied so why should we try to pidgeon-hole an illness by age profile.

Healing wishes.


Martin
Cumbria
UK