Son of 14 just diagnosed with WG, any advice?

[julesfarm]

He fell in on holiday in Greece last week, luckily the medical treatment he received was brilliant, put on dialysis for chronic kidney failure, then plasma replacement to try to halt bleeding in the lungs and methylprednisolene. Air ambulance back to Bristol Childrens Hospital where diagnosis confirmed, and where we remain for a while. Treatment continues and cyclophosphamide starts on Monday. Are there any other young sufferers of this awful condition in the West Country?

[lisa-ranyell Vasculitis UK Volunteer]

Hi julesfarm

It is gratifying to see that the medical profession has done its job so quickly for your son. Even so this must be a very worrying time for you. Rest assured it sounds like your son is getting the best possible care and sounds like the right treatment, although you will learn if you stick with us that this differs for all of us. I am sure you will find others on here in similar situation. I was 37 when diagnosed with WG which is quite average, but it is not unusual for it to strike younger. Stay strong and positive and trust in the treatment, if you need to ask anything else, please do.

Take care - Lisa

[PatriciaAnn]

Hi Julesfarm

So sorry this is happening to your son. We do have a number of younger people who have been diagnosed but this is a rare disease, mainly affected patients older than your son, so whatever age we are we are spread out through the UK.

Have you tried also posting on our Vasculitis UK Facebook site. Also, if you'd like to visit our website: vasculitis.org.uk, look for "Local Support Groups" and go to "West Country" you will find Charlotte's details, and she may be able to put you in contact with a young vasculitis patient.

Best wishes to you and your son.

PatriciaAnn

[DevonLottie]

Hi, This is Charlotte from the West Country! I'm so sorry to hear about your son. As Patricia Ann says, it's a very rare disease and I don't know of any other person of his age in this area - that's not to say there isn't and it would be well worth posting on the Facebook site to see if you can find anyone. I do know of someone in Taunton who's daughter was diagnosed at a young age and could contact her for you if you would like to talk to someone? If you'd like to contact me you can email me on [e-mail]. Best wishes to you both.

[Holme1]

My son, who is 17, fell ill four weeks ago with low kidney function, it was seven days from first going to the doctors with a a wide range of niggling symptoms to being in the local hospital and starting treatment for Vasculitas. We are so grateful for such a quick diagnosis and the speed of treatment. We are in Yorkshire and he is now being treated at St James Renal Unit, Leeds.

I guess the age difference between 14 & 17 is too large for them to share experiences but as parents we may have similar experiences.

I feel we are at a very early stage with the situation and my biggest frustration is the lack of concrete information. I want to KNOW the future path and yet the illness and the treatment is a dynamic process that changes with each day. Treatments that were due to start in 3 days suddenly start 'tonight'. Processes that were meant to follow each other in an orderly fashion are suddenly happening at the same time. It is scary but at the same time I am reassured that his condition is being treated dynamically and that each change in blood results or other tests is responded to in his treatment.

He hasn't needed dialysis, he has had steroids, 10 Plasma Exchanges and his second dose of cyclophosphamide two days ago.

I am told his Vasculitas is C-ANKA Positive manifesting in Kidney Glomerulonephritis. I can't seem to get any other description from the doctors but I keep asking because on this website there seems to be very specific names of types of Vasculitas.

Because my son is 17 he is treated as an adult and that has not always made things easier for him or us. I feel I have to push to get information because the law says he is entitled to his privacy. He's not bothered about his privacy. When we going for his third visit to the GP within 6 days for new blood results he would have much preferred it if I had just gone and got them. It was from that appointment that he was taken straight into hospital so it was a good job he gave in and came with me!

It is all so new to us that I have only one piece of advice and that is that taking responsibility for treatment is a big help. My son understands that he has to say if he thinks that the Nurses or Doctors don't have the latest information or to ask for things that make processes easier for him e.g a numbing gel before the umpteenth canula is put in or averting having a two bag blood transfusion repeated because the staff are looking at blood tests from the previous morning. This is not a criticism of his treatment but reflects my belief that by trying to understand and being involved in his treatment my son feels less helpless and more empowered and is encouraged when he has made a difference.

My best wishes to you and your son.

[John_Mills Volunteer]

We know of a few young people with WG. The youngest is 13 now... he was diagnosed 2 years ago. If you would like to contact other young people, as Charlotte has said the fb Vasculitis UK group is a really active group and there are young people with vasculitis who are members. Also we may be able to put you in touch with other young people and their families if you email us [e-mail]

take care

Susan and John

[DuncanC]

Hello. We do not live in the West Country, but in Kent. My 14 year old son was diagnosed with MPA around Christmas time, an ANCA-positive vasculitis that is similar (related?) to WG. It manifested in the kidneys and lungs, with quite considerable damage. You will of course be wanting to know what the outcome will be, and I am afraid as Holme1 observes, none of us truely know. There are various longevity studies, but they do not take account of age and the manifold variations that the condition shows. My son is looked after under the Evelina Childrens' Hospital in London, and they tell me that should what is left of his kidneys be damaged further in a future "flare-up" of the disease, that the fact of vasculitis does not prevent him having a future transplant, which offers another avenue for hope.

You will of course be still reeling from your experience and the diagnosis. It is an appalling shock, and I really feel for you and your son, as I do for Holmes1. What I can say is that the treatment appears to be effective - it has been in my son's case, and he is heading into what they call remission (it isn't really, daft word, I prefer "dormant"). New treatments are under active research, and my understanding from those in the research industry is that the vast amounts of research into the other auto-immune disorders will have a knock-on benefit for vasculitis, as well of course as the specific vasculitis research going on. Maybe one day there will even be a full cure!

In the meantime, as you find your own way through all the information and advice, you and Holme1 are not alone. And in amongst the anguish, there is real hope, and good times also, so hang on in there!

[julesfarm]

Thank you so very much to you all who answered me. It just helps knowing there is some kind of support network out there. My son is due to have his first dose of Cyclophosphamide later today, so fingers crossed. He has so far been very stoic about the treatments , and thank goodness has kept his sense of humour, which i feel will be important in the days, weeks, months to come!

[Nadsrziguix]

Hi I am 22 and I live in the UK I've just recently been diagnosed with this disease when they eventually found what was causing all of the symptoms they put me straight onto steroids then then later came the chemo and a lot others drugs . Just wondering how he is doing and is he any better now?

Hope all is well for you all

[julesfarm in reply to Nadsrziguix]

Hi there, my son is now 20 and studying medicine at Oxford! After a horrendous 2 years on dialysis with various relapses and much time spent in hospital, he eventually had a kidney transplant, I donated one of my kidneys, and after a lot of rejection problems, he has gone from strength to strength. We are so very proud of him and all he has achieved despite everything, and are so relieved that he is able to live a ‘normal’ life away at university, despite all the drugs, medical checks etc. We don’t know what the future holds, he is very realistic, so we just live for the moment.

I hope you manage to stay with the treatments, and it’s not easy, take responsibility - the NHS is not infallible - always keep a diary of treatment, drugs, Med spots etc.

And Good Luck and best wishes

[Nadsrziguix]

I think I was starting with the disease at the same age as well as I went deaf in my ear and problems with my nose and had to have operations on it that did not fix it but it stayed suppressed until now, that is absolutely amazing tell him to keep up the strength and keep on fighting. It is a very hard time and not sure how awful it was for you to see your child like that but keep up the strength as it all gets better in time. Best wishes