Can you help me....research help needed urgently..

**carole** · 08-27-2011, 10:09 PM

I have been surfing the net in search of something which is very important, and i just keep coming up with nothing.

let me explain, some of you will know my nieces husband has been very ill with a very rare illness, there are only like three people including him in my country who have this, good pastures syndrome, he underwent plasma exchange treatment, chemotherapy and is on about 8 medications per day, he was told he was in remission, and the remission is like for about twenty years,however sadly it has returned in just two years, and now he is under going more plasma treatment, and so far responding well better than last time, this illness effects the lungs and kidneys, in his case his kidneys, because this has never happened before, well here in NZ, they really are not sure what to do, all a bit of guess work, he is to have a new treatment called fusion, after the exchange, at around eight thousand dollars a time,luckily it is funded,the only blessing in this tragic story.

What i am asking of you all do you know of or have heard of anyone in the US or UK or anywhere worldwide, where this has happened to them, I really want to contact a specialist in the US or UK,and find out how this has been treated, and what options there may be for him, even if it means traveling to the US or UK, and raising funds to do so, this is a matter of urgency, and this is a life threatening situation.

Meanwhile this brave young man age 28yrs old, continues to run his panel beating business (fixes your crashed in to cars etc,) i know you have a different name over there for it,an example, he had five hours hooked up to the machine, like dialysis but in his neck,then went back straight away to work in his panel shop for another five hours, this treatment is hard on him and makes him very tired, but he just keeps at it,also my niece is working part time, trying to hold on to it all, keeping up her spirits and my sister looks after their two precious boys aged 1 and 4 whenever she needs to.

It has been heartbreaking to see what they have had to endure, both emotionally, financially,just recently he lost his apprentice, who was tragically killed in a car crash at only 18, he took it very hard, and they have had some very stressful times,and more ahead.

I know how great everyone here is at finding out things, so that is why i came here to ask for your help, anything would be appreciated, i myself will continue to look as well, thanking you in advance and thanks for listening,

**Catty1** · 08-27-2011, 10:33 PM

pm'd you

**Karen** · 08-28-2011, 12:04 AM

Here is the NiH's page on it - that the American National Institute of Health -

http://kidney.niddk.nih.gov/kudiseas...s/goodpasture/ - it has some other links at the bottom of the page that might be helpful.

**carole** · 08-28-2011, 12:09 AM

Thanks candace and karen will go check it all out.

**Husky_mom** · 08-28-2011, 12:53 AM

I was going to post the same as Karen did.. hope that helps..

here´s a bunch other links
http://www.google.com/#hl=en&cp=22&g...w=1280&bih=709

**carole** · 08-28-2011, 04:00 AM

Thanks everyone, i have been to these sites before, so if you can find anything new or maybe a contact for a specialist in the US or Uk, That would be great, thank you for taking the time to read and post,means an awful lot to me.

I have just heard he will be given the new drug RITUXIMAB,as an infusion on wednesday, while still under going the plasma treatment, it is a pretty scarey drug, can have some serious side effects.

**Freedom** · 08-28-2011, 07:34 AM

All I could find was the links at the bottom, as Karen had posted.

Did you send emails to the 2 helplines listed there?

I am so sorry your family is going through this.

**mrspunkysmom** · 08-28-2011, 08:57 AM

Originally Posted by carole

Thanks everyone, i have been to these sites before, so if you can find anything new or maybe a contact for a specialist in the US or Uk, That would be great, thank you for taking the time to read and post,means an awful lot to me.

I have just heard he will be given the new drug RITUXIMAB,as an infusion on wednesday, while still under going the plasma treatment, it is a pretty scarey drug, can have some serious side effects.

In case you haven't seen this: The mayo clinic is conducting a trial for RITUXIMAB at this point. Here's the LINK.

I also found this link to an Edinburgh research group.