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Stephanie
09-04-2009, 06:07 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 :)

Sangye
09-04-2009, 09:08 AM
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? :mad:

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
09-05-2009, 03:13 AM
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
09-05-2009, 12:56 PM
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
09-07-2009, 05:02 AM
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
09-07-2009, 05:10 AM
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
09-08-2009, 05:34 AM
haha, i dont think ive ever been used as an example like that before
i hope she benefits from my story :)

brian willman
09-10-2009, 05:27 AM
Hi Stephanie

You tell a very moving story.

Good luck with everything. Life is beautiful whatever happens.

Brian

jola57
09-10-2009, 08:51 AM
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
09-10-2009, 06:21 PM
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

lafounk2
09-10-2009, 09:32 PM
Hi Stephanie,
You are truly not alone. My son, Josh, was diagnosed with WG in April. He's doing much better now since being on Prednisone and having chemo. His nose bleeds time to time (which is where this all started) and worries me that WG is still there, and his kidneys are not well (WG damaged them), but he's been very strong and started back in school this week. He's in 10th grade.

Currently, we are publically talking to people to see if they would be willing to be a kidney donor to Josh. Me, his mom, and his dad don't have compatible blood types for kidney donor.

Well, enough of our story. You take care Stephanie and stay strong. Too bad you lived so far away as I'd have you meet Josh.

Take care,
Kelly

Sangye
09-11-2009, 01:00 AM
Kelly, have you considered getting the local news to do a story on Josh? I've heard of people offering kidneys when they hear a story like his.

And tell him "Atta boy" from me, for going back to school this week. He must be one tough kid. :)

Doug
09-11-2009, 01:09 AM
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

Excellent point!

lafounk2
09-11-2009, 01:16 AM
Hi Sangye,
Actually yes, we did post Josh's story in our local newspaper 2 weeks ago, and the transplant coordinator told me that she received ~7 calls for potential donor. She said most were not compatible, but I have to hold onto hope. A coworker of mine wants to be a potential donor and a week ago had blood work for tissue typing to see if he is a match. We should know in the next few days. Please keep your fingers crossed and say some prayers.

Thanks,
Kelly

Sangye
09-11-2009, 01:18 AM
You betcha.... And maybe call a tv station, too? It'd be educational for more people to learn about Wegs, and with the number of undiagnosed cases out there, it might even help someone get a proper diagnosis.

lafounk2
09-11-2009, 01:26 AM
Yeah, we tried our local news channel 5 and they never got back to us. I agree, it's very important to spread the word about this disease. My poor Josh, born prematurely at 4lb 8 1/4 oz, 2 months premature with a hole in his heart (VSD) has had a hard time since being born. He underwent open heart surgery at 10 months old. Who would have thought that now we would be dealing with a rare disease. Ugh!

Sangye
09-11-2009, 01:36 AM
Poor kid...I just hope he's burning up all that misfortune early in life.

Getting diagnosed with Wegs now (vs even a couple years ago) means he might skip some of the more damaging drugs and achieve long-term remission. The non-chemo drugs--Cellcept, Rituximab-- show such promise.

Call the tv channel back or write a letter with the info. They probably didn't get back to you because they had all the stories they needed at the time. They often need "filler" stories, but don't keep them on file. And sometimes if they know a local paper just did a story on the same thing, they want to space it out.

Stephanie
09-11-2009, 06:52 AM
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.

im fine, ive started back at college, im not sure what it is in the US?
but im doing my A levels Music English Pyschology and Sociology, being normal with everyone else and feeling good. :)

Doug
09-11-2009, 12:58 PM
Great on all accounts! The education is so important these days. An advanced degree almost isn't enough for even factory jobs. Plug on, get those good marks, and may your WG stay in control!:):)

brian willman
09-12-2009, 08:15 PM
Stephanie - there is alot on this website and other websites about people who are dealing with very difficult outcomes of having Wegeners. There is another side - I developed it seriously last year and was critically ill. Now I am in very good health and working normally. Last week for the first time I met up with someone else with Wegeners. She is also in a good place - a teacher (in London), youngish, a single parent and she was sky diving a few weeks ago.

I don't want to underestimate the incredible challenges that some people have dealing with this illness but not everyone is in the same boat.

Sangye
09-12-2009, 11:19 PM
That's absolutely true. I often wonder how many Weggies there are out there who are doing just fine, so they don't join a support group. To be honest, I'm not sure I would have joined if I had recovered quickly. I probably would have just gone back to my life and forgotten about it.

Even when I can put these days behind me, I'll still remain to help others and show them the other side of Wegs. And if my days don't get better, I'll stay to help guide others around the potholes I have fallen in!

I'm really glad that you joined, Brian. It helps me a lot to know you can get a regular life back. Can't hear that too often. :)

brian willman
09-12-2009, 11:52 PM
Thanks Sangye. I've just posted a fuller description of my experience in Weggie's Stories under An Optimistic Story.

Doug
09-13-2009, 03:55 AM
Brian- Thanks for sharing that! :)

jola57
09-14-2009, 05:32 PM
Stephanie, how wonderful that you are continuing your studies. Live your life as normally as you can, enjoy every day and most of all be happy:D

maria garcia
05-30-2011, 03:07 PM
im fine, ive started back at college, im not sure what it is in the US?
but im doing my A levels Music English Pyschology and Sociology, being normal with everyone else and feeling good. :)

STephanie I just read your post from year 09, How are you today? How long did you take the meds and how long have you been on remission? I have a daughter thats 17 and there trying o rule out Wegeners. Her P Anca was positive so now there putting the pieces together. You can send me a private message. Im new and sometimes I get lost in the blogs.