Any Young Adults with WG who want to talk i ... - Vasculitis UK
Any Young Adults with WG who want to talk i am 21 years old not coping to well feel like the only person in Devon with this.
Hi Dave, I'm afraid I'm not young (old enough to be your mother!) but I do live in Devon and I do have WG so you're not alone down here. I run the local support group for the West Country - most of us are old cronies but there is one person who is in her late 20s. If you want to ask any questions just message me or look on the Vasculitis UK website under support groups and you'll find my phone number - call me if you would like to. Take care. Charlotte
Thanks i hope to get in contact soon. been dealing with this by my self for too long. x will be nice to talk.
Charlotte, you beat me too it!! My husband has WG and is also not young. Dave, he could be your Dad!! We live in Devon but his specialist readily admits she doesn't know an awful lot about WG, and as my husband is still having problems, he's going to be referred back to Addenbrookes.
I'm just wondering who you are being treated by and where? and are they dealing with your WG?.
This is a wonderful site for help and support, so do use it, we're mostly young at heart if not in body, so please don't feel as though you're on your own down here.
North devon Hospital in Barnstaple is my Place of Treatment. I have first name relationships with Dr Hands Dr Moody Lungs specialists Dr Kyle Dr Manhas Remotology Specialists Dr peasgood Kidney Specialist Dr Charles Sharp who published me in the london medical journal lol but my two Consultants who i see regularly are Dr Kyle and Dr Moody who decide what meds i should be on and steps to take in the future.
Hi Dave!
I'm 26 years young and live in London 
I got diagnosed with WG 7 months ago, so I'm still kind of new to it aswell.
Like Nadine99 mentioned, This is a great website for advice and help.
Also check out the Facebook group, VASCULITIS UK.
Let me know if you want to chat a bit more
Take care
Oh i am not new exactly had WG for 12-13 Months but been in such massive denial and private grief over how totally ruined life has been due to it. no uni no job no job prospects now went back to college and that got too much after two months it had to be dropped. only just got the will power to join the Facebook group and this community. but living in Barnstaple is like being forgotten when it comes to problems.
You're really not on your own Dave, we've all been there and know how you are feeling. First thing to do is get your wg under control. If your consultants don't have much experience it's quite acceptable to ask to be referred to a consultant with specialist knowledge. There are fantastic consultants in Birmingham, Oxford, Hammersmith and best of all Cambridge. If you want advice on referrals John and Susan Mills (Chairman and Secretary of Vasculitis UK) are the best people to contact. There is life after wg and you will find that once the disease is in remission you'll be able to look again at all those things you want to achieve. Just don't push yourself too soon or you'll find it takes longer to recover. Charlotte x
Hi Dave
It's hard going, but you'll get there. It's taken me just over two years so far, but I was in a coma and am waiting for a kidney transplant.
Take care. Ryan.
Hi I'm 24 from Portsmouth how r u, how has WG effected u x
I was doing Film Production and cinematography with Bournemouth uni. i had finished my first year and was working to save up and go back to do the second and third years. when i was struck with sinusitis, loss of hearing, ear ache, tooth ache, joint pain, followed a week or two later with coughing blood, vomiting, fever and heaving cough. Doctors said i had flu! flu! but when i was finally admitted to hospital i was diagnosed with Wagner's. that was December 2011 and in september 2012 i managed to start college again trying to get my life back in order because there was no way i will ever be fit enough to direct, produce, or even be part of a crew for a film thanks to this illness that can strike me down when ever it wants to. so i did not make it back to uni. also college was a bust because i missed to much due to the mornings being to hard to recover from shaking and coughing blood. that and the steroids have muddled my memory badly. I would like to know if you do make it back to uni and how you are doing. i am 21. not doing very well coping with this illness still dont want to believe this is happening to me and not coming to terms with the limitations it has forced upon me. i only know one other person near my age with this illness so it would be nice to talk to someone who can relate to what i am going through. please wright back. x
Hi sounds like I have been effected the same way, have you got permanent hearing loss as I think i have I have to we're hearing aids it sucks! I have really a annoying nose problem always running and I have to wash it twice a day with the nasel doush, I also have nerve damage in one side of my face very painfull at times, I wasn't coping very well due to the steriods making me gain weight left me feeling depressed and not wanting to go out but I'm on a low dosage now and weight coming off quite quickly ??, I understand about going back to work or studding I don't no what to do either I don't want to make myself ill again so just take it as it comes I suppose x
I have sporadic bouts of hearing loss that come and go! went up to my local hospital to get my hearing tested and on that day no problem so got a clean bill of health! I say yeah its fine today but today i am not having any problem and i think the ENT doctor thought i was being paranoid. waste of my time. also i have loads of nasty stuff which can only be described as nasty stuff that i have to blow out my nose with salty water! never heard of a nasel doush sounds painful. In rather a up crap creak without a paddle situation at the moment. went to see a ESA medical examiner got a clean bill of health! go to see disability adviser at job centre and he says there is no way i am fit enough for Jobseekers! so no ESA no jobseekers great well now i have to appeal go through a long boring appeal. with only my health and sanity at stake.The one thing i do on weekdays is i go gym for some physical therapy to loose the 5 stone pred steroids put on me. i go at 7pm because by then i have come around and feel almost normal i only do 30 mins of cardio but i have lost 34Lb in just over 2 1/2 months! so i feel amazballs for it! i hope you too loose the weight and can take the good as it comes. x because i will if you do.
Yeah tell me about with the whole job seekers thing drives me nuts, for some reason because no one understands what we have they don't help us it just ain't fair, at least you go out to the gym I do nothing all day everyday I need to do something with my life lol, we'll done on losing that much weight it's really hard on steroids to do that, keep up the good work x
Going out even for a little walk everyday is important. staying in all day is bad. If you want to loose weight and feel like you are getting better go for a 5min walk next day 10 next day 15 then the next 30 mins. walking my dog can help me clear my head and feel a lot better. there was a time a 30 min walk was all i could do a day but now i have no problems walking or even jogging a bit slow natural progression. obviously if i over exert myself i pay for it coughing blood or sick faint but knowing your limit is important.
The stuff that comes out your nose I no what ur on about
Mine was really bad and my nose has collapsed quite a lot
I clean it the same way with salt water and by carb
Just in a bottle, but the thing I was doing wrong was not sterilizing my bottles properly witch was making it worse, literally the next day after I brought a baby bottle sterilizer It was almost clear It was amazing I was so fed up of keep washing my nose and that stuff coming out so happy it's cleared up
Really it was my own fault just a little tip x
ok just had a read through all your previous comments, questions and reply's. i was diagnosed with WG on 3rd January 2012 only i few days after you?
Yeah i thought it was pretty close do u get a lot of help there with friends and family
Hi Dave,
I believe I have written something on VUK facebook page to you. I didn't mention then that I had a terrible time with depression quite recently when I didn't feel I could, or even wanted to, cope with the way WG affects me.
I was having some very dark thoughts during that time but I found counselling helped me a great deal and I have to come to terms with the fact that I am grieving for the person I was before I got this blooming disease. I am now slowly beginning to accept that I have a chronic condition - chronic kidney disease.
I have also come to terms with the fact that I may never be the same again. The way it has affected my ability to work due to extreme fatigue and painful joints most days. The way my memory is affected. The way the pred has altered the way I look - 4 stone weight gain for example 
But, as I mentioned in my facebook comment, I got involved in setting up a local support group in my area and that has made all the difference. Actually being able to talk with somebody else, face to face, who truly understands how the disease makes you feel, when nobody else who doesn't have to live with Vasculitis can, has been extremely helpful to me and to the other members of the group.
I am getting involved in fund raising for VUK very soon and am always trying to raise awareness of Vascultis whenever I can. It gives me something to aim for and that helps me a lot also.
Vasculities is a lonely disease as you know Dave and I'm so pleased Charlotte will be able to help you with a support group near to you. You will find that it's very helpful as you will not feel so alone and that really does help a great deal. Plus you can always 'chat' to others who understand both on here and VUK facebook page.
We are all here for you sweetheart so please never feel that you are alone because you are not as we can all understand
Take care
Jacqui x
hi dave iv lost everything due to this illness job house relationship all because of how it affected my mind i have had to have a lot of help for low mood . my wg was diagnosed quickly and treatment was sucsessful for now all i have to do now try and build a life around wg its not easy im only 32 but have two kids i need to be strong for
hi i know how you feel, i cant go uni to finish my education, i tryed to start again with college go for a less stressful job path but after two months i had to drop out, i cant live with mum and dad they dont have enough money to support me so i live in a house share alone. i cant get any where with relationships ect but life must go on and i struggle for hopefully a happy future. i hope we all can get some normality to are lives.
Hi Dave
I'm local to you and currently they are investigating as to whether or not I have vasculitis. Blimmin' long old story and it's also taking a long time to see all the various people that I apparently need to see! However, I am waiting to see Dr Kyle at NDDH.
With me, things kicked off back in November/December last year (seemingly off of the back of a virus..we've gone all round the houses with potential causes for my symptoms, including Guillain Barre Syndrome..they are sat on the fence with that as a lumber puncture wasn't done until 9 weeks after the inset of the more 'severe' symptoms).
At the end of January they started talking about vasculitis. I'm now back home (after being in and out of NDDH like a yo-yo for the past 2 months) and as of yet no concrete diagnosis means no medication of any sort, which leaves me kind of concerned!
After reading about various types of vasculitis and symptoms, alarm bells have started to ring a bit as, in hindsight (good old hindsight) I've probably had more subtle symptoms for the past 7 years or so, one of which lead me to have my tonsils out at 30 and also two lots of sinus washouts, loss of hearing which is intermittent (and which I have put down to doing a lot of swimming). Anyway, I have rambled enough!
I'm 34 (so old compared to 21)but literally 10 miles away from you!
Hi sorry to only just be replying been very busy raising money for the ND Hospice and other commitments after the end of this week i am free to meet up or talk more about anything you want to know or to just chat maybe meet in Barnstaple. i have been going gym to get more healthy and to keep me motivated. add me on facebook David Tyzack i am apart of the Vasculitis-uk facebook group. please get in contact.
Hi Dave
Will go and look for you now on FB! Seeing consultant at NDDH next week...see what that brings! Not seeing Dr Kyle or Neuro until after I've had my MRI, which is due sometime towards the end of March.
Currently on another week long course of antibiotics for throat-chest-sinus infection 
Hi Dave, I'm afraid I'm nowhere near your age and I live in Kent, but your symptoms are so like mine at the beginning, it bought back a lot of memories.
I struggled for 8 years before I found this group. I had never met a fellow sufferer and felt a bit of a freak!
I am a self employed textile artist so I just worked when I could. I had to stop a lot of the adult teaching but the odd sale of my work gave me a boost.
I try to take things one day at a time. I feel so sorry for the younger people who are facing life with this. It does seem to get easier but I expect it just becomes normal after a few years
When my nose refused to heal [ don't know where all that gunk came from] I had steroid nasal drops which really helped.
I try to stay positive as a good state of mind is vital. I refuse to let this ruin my life. I do as much as I can on good days and rest on bad days. I have a wonderful family and the strangest, nuttiest group of friends that treat me as normal and keep me laughing.
This group is wonderful as you never feel alone and there is always someone to talk to. I hope you find lots of new friends in your area. Good luck, Christine x
Hi Dave!
I'm 28 now but was diagnosed with WG when I was 20. Just like you I had life all mapped out and had it all taken away from me literally overnight when I got sick. Our symptoms were exactly the same - just woke up one day with what I thought was a bad sinus infection. Things got a whole lot worst from there. Spent weeks and weeks in hospital, had to give up everything. My dream job, a dream career etc. Like you are now, I too lost hope back then. I asked "why me" all the time. But guess what... It gets better! Life will get better.
Number one priority is getting the illness under control. In my case it took almost 3 years! I went through all the medications out there. I got sick, then better, then sick again. I almost lost my battle with it a couple of times after picking up nasty infections. My doctors really struggled to get my condition stable. I am extremely fortunate to be under the care of the Vasculitis specialists at Addenbrookes. The whole team there are just fantastic.
Finally, in 2008 I was given Rituximab after a long fight with my PCT. It saved my life! Soon after the first infusion I went into full remission and remained that way for 5 very healthy years. The stability of a long remission is what you need to be patient with. Once you achieve that, the world is your oyster!
I now lead an extremely active life!!!
I opened my own company overseas - a swim school. I am in the water every day. I go to the gym, I run, I swim, I surf...and I do it all with such pleasure that I'm bursting with excitement every single day. I had (still have) serious pulmonary issues with the WG but with some good will power and concentration when exercising, nothing gets in my way. I consider my lung capacity stronger than my friends despite the two large cavities and scaring I have in them!
Life is great. When you loose so many years laying in a hospital bed sick you REALLY get to appreciate the smallest things in life...like walking across the street to the shops, or going out at night with friends. Going on holidays...or in my case, as ridiculous as it sounds...even biting into an apple! My sinus' were so bad that even my gums and upper mouth were inflamed. I would see someone on TV eating an apple and dream of what that would be like again! When you know what it's like to almost loose it, you learn to appreciate and love everything in life. Even the challenges it throws at you!
10 days ago the WG relapsed. I knew straight away that I would be ANCA positive and I was. I received another dose of Rotuximab last Tuesday and I'm now just resting and waiting for things to "settle down" again. Im back on a high dose of Steroids but im fine with it, and what ever side effects may come! i was forgunate to go 5 years with NO meds at all apart from a daily BP pill.
Taking so much time off from work is driving me crazy but as I see it, anything could have happened really. A broken limb, a bad infection etc. so the fact that its WG doesn't really bother me too much.
Hang in there. Get yourself better. It will take time but you're young! You will find a job you love and things will work out. You'll find the love of your dreams and they will help you through this too. This is a life long illness but it doesn't have to dictate the way you live it forever...
You'll get there soon enough
