what age did you first have this?

[Betska]

Curious to see how people first got wg at what age, my nephew was 25 and his started with a sore throat then months later after many failed diagnosis was in renal failure from WG, his is mostly kidneys, hes had it 6yrs now and isnt well right now on 11000mgs of a mix of cyclo and pred etc a week after a 3yr remission. Also has anyone had a transplant and hows that all help or not?

[Al]

Curious to see how people first got wg at what age, my nephew was 25 and his started with a sore throat then months later after many failed diagnosis was in renal failure from WG, his is mostly kidneys, hes had it 6yrs now and isnt well right now on 11000mgs of a mix of cyclo and pred etc a week after a 3yr remission. Also has anyone had a transplant and hows that all help or not?

Often you see demographic descriptions of the "typical" Weggie, Betska: upper middle-aged male or female, more often white than black, etc. But the fact is, Wegs is an equal-opportunity scourge. Regardless of race, creed, national origin, or age, we somehow got on the list. There have been (on the forum) reports of 3 year olds. I was diagnosed at 61, though I suspect the disease itself was in place some years before that. Still, is makes me very sad to hear of younger people looking forward to a lifetime of nasty drugs.

A few of us had had transplants, or see such possibly in our futures. This is always a desperation move, and never an elective procedure. For one thing, WG is not actually cured by new organs. In fact, a transplanted kidney, say, can then be attacked in precisely the same way as the old one.

I hope this helps.

Al

[mishb]

Hi Betska,

I was 44 when diagnosed mainly with all head related....sinus, ears, eyes. And then there are the roving joint pains.

On this forum and also on a fb support group, there are many young adults, teenagers and children with WG. It's not particularly fussy, it tackles the best of us.

[malin]

I'm 24 now and I had my first symptoms about a month before my 16th birthday and was diagnosed about 2 months after my birthday. My initial symptoms was ear involvment, at first doctors just thought I had a very bad "dual" ear infection but it didn't respond to any antibiotics and was quickly getting worse, when I finally got diagnosed I had been in hospital for a week due to severe pain, I was practically deaf on both ears and was not really concious, I was awake but I wasn't really "there" if you know what I mean. I had extreme fatigue and was very weak. Once I got the right treatment I started getting better although it took me quite a while to come back to a more "normal" state

[Pete]

Hi Betska,

I was diagnosed last year at age 64. My symptoms were an ear infection in my right ear, a non-productive cough, night sweats, and crushing fatigue. I was fortunate to be diagnosed quickly so relatively little damage was done. Now, I feel good and am able to lead a life that's nearly normal.

Pete
dx 1/11

[Betska]

Hi Betska,

I was diagnosed last year at age 64. My symptoms were an ear infection in my right ear, a non-productive cough, night sweats, and crushing fatigue. I was fortunate to be diagnosed quickly so relatively little damage was done. Now, I feel good and am able to lead a life that's nearly normal.

Pete
dx 1/11

yes I see just from these few posts its any ages but what I see as a common early onset is nasal,throat ear infections, makes me wonder if this original infection is a super bug we hear about that some peoples immune system cant fight and it turns on itself. We are told not so much it only ever hits the older people but in this area he is the youngest most are 45 plus we also were told it hits a big proportion of under 5yr olds.I am concerned for his sister, shes constantly got sinus infections that no treatment gets rid of, maybe she should have some tests to make sure its not in her as well , I did wonder about how putting in another kidney would help being this disease is in his system so basically itll just attack the new kidney, or so I assume. Not sure what % of function he has but I know both kidneys are badly damaged, hes really unwell right now but trying to live normal even going to play soccer tomorrow