Hi Everyone

[annekat]

Barbara, you are right, anything to promote awareness of WG and other AI diseases, and it is never too early in a child's life to start. So many kids have allergies, this could be explained as a similar thing, where the immune system goes haywire, but of course you are right that it couldn't be done in a way that would scare the children. Just that they should be taught about the immune system in general at an earlier age, so they understand that aspect of the workings of their bodies. And more should be taught about other areas of the body's functioning, too, and other diseases that friends or family members or neighbors might be going through. Thinking back to when I was kid in school, we did learn about the major systems such as the skeletal, circulatory, nervous systems, and the various organs in the body. But I don't remember learning much of anything about the immune system or very much about any kinds of diseases. I'm not sure what use kids would have for all this information, but at least some of the rare diseases would be more out in the open and talked about and people's eyes wouldn't just glaze over when their scientific names are spoken. People would be more prepared as young adults and older for knowing the signs to watch for and being proactive about getting medical attention. Doctors would then be forced to also be more proactive, one would think, as the general public becomes more aware. Oh, yes, it is all very idealistic. As for autoimmune diseases, I think Marta and others are really on the right track in getting them looked at as a group, and the ultimate goal being to find "the common thread" in what causes people to get them, which could lead to effective and life-saving treatments that are better for us than the meds we are now taking, or better yet, a cure. Anyone not familiar with Marta and her work will find out about it here soon enough. Her blog should not be too hard to find, check the "stickies" in the forum index under general WG issues, or find one of her posts, which will include the link to the blog.

In any case, Barbara, your idea of promoting events for kids that are fun, and also further their awareness, is a very good one.

[Linda22]

Barbara, I agree with Anne it is a brilliant idea. People definately need to be made more aware about auto immune conditions especially that there are killers out there like Weggies and Goodpastures and if we can start with the children all the better. I also think that the medical profession needs to learn more about these conditions too, because when I asked a doctor in ICU if I can have an update on Brandon and if the treatment is starting to work, the answer I got is " I don't know anything about his condition or treatement the only time I have seen this is in a text book and we briefly went over it" This is not the kind of answer I wanted to hear. When I asked the specialist that was treating Brandon if he has dealt with anything like this before, his answer was " Yes we have had numerous cases" now this contradicts the rareness of the condition in South Africa.. The South African Blood services, who did Brandon's plasma exchange and dialysis, had also never dealt with a condition like this before and the staff that were doing the treatment were asking me to explain what Brandon had. On a positive note though they had asked for specific training on auto immune conditions so that they could also know what they are dealing with.
Another thing is that apparently no one knows precisely what causes someone to get Weggies. I was informed that more than likely it is genetic or it can be caused by gases in the air or by a viral infection that he had. After Brandon passed away I had all my other children tested, just in case it is genetic, but all they could test for was Kidney function, their immune systems could not be tested!!!!!! Now surely, this is a killer condition, and there are no tests to determine how active their immune systems are????
I think getting the kids that are in Juvenile detention involved with this is a fantastic idea, because it might teach them a very good lesson about taking life for granted!!!!!! And also never think that anything like this will never happen to you because it can and within a blink of an eye your life has changed!!!!
My aim is to make this a world wide campaign and Thank you all for your suggestions so far and I would really appreciate any advice that anyone can give me or other suggestions as well.

I have put a candle marker on the map in memory of Brandon and I have a special place in my home just for him with a photograph and candles surrounding it. Everytime I pray I include you all in my prayers and I pray that you all go into remission or that a miracle cure is found

Lots of Love

Linda
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[annekat]

Linda, you are a very strong person and I'm sure will be able to make something positive out of the family tragedy which you are enduring. You will make Brandon proud.

I think it is getting to the point where there is no excuse for doctors to use the supposed obscurity of this disease to excuse themselves from knowing anything about it. If it was all that rare, we would not have all these forum members, and new ones joining every week, it seems! The disease has even been featured on episodes of the TV show House, albeit not accurately, I've heard. There are plenty of us out here! And same for other autoimmune conditions, I'm sure!

As for what causes Wegs, that has been discussed on here a lot, and while there could be some genetic predispositions, it is generally not thought to be passed down genetically. There are various things thought to be possible triggers, such as unusual infections, exposure to an excess of certain substances, incidence of many respiratory problems in childhood, etc. But they still have not said, as far as I know, what they definitively think causes some people to get it and not others. A doc who passes it off as more than likely genetic is incompetent and/or ill informed, according to what I've learned on this forum. Which doesn't mean two people in the same family cannot get it. But genetics is not seen as the direct cause.

[Alysia]

Dear Linda,
thanks for your prayers and wishes to us.
In small countries there arent many cases of WG and the docs knows almost nothing. Im my case, in Israel, I saw about 6 lung docs - only one saw another weggie but me, I saw about 12 ENT who never saw any weggie, 3 eyes docs that never saw any weggie, 5 GP that never saw any weggie but me, and 4 reumatologists which kept it as a secret how many weggies they saw, if any. and they knew very little about WG.
Please continue writing. Im thinking about you.

[Linda22]

Today is 7 months that Brandon passed away and it has not got any earier trying to get used to life with him. There is a hole in my little family. Being a single mother and basically bringing my children up myself, they mean everything to me and never in a million years did I ever think that I might lose one of them. Also the way he died I am battling to come to terms with and he was not ready to go and fought right up to the last moment.

On the last day of everymonth we let off Helium balloons into the air with a photo of Brandon on each one and special messages to him from all of us. I am sure that he is getting them because we have never had a balloon pop even when one gets stuck in a tree it somehow gets itself loose and carry's on flying. I know that he is currently looking over us but i would still have rather hadv him here with us in the flesh.

[Alysia]

Dear Linda,
yes, I believe that Brandon is over there, getting your words and love, watching you, taking care of you all... with the angels... he is an angel now.... free and without pain... without the burden of this world...
my heart is going out to you... I don't know if time heals the hole and the unbeareable pain... I hope it can be less...
Brandon is sure very alive in your hearts and minds and souls,
and through your writing here, he is also alive here with us.
Im sending you my hugs and prayings
please continue writing.

[Linda22]

I have read every story that has been posted on the site and the symptoms that have occured. I am trying to think back if Brandon had any of those symptoms that we maybe missed, but he didn't the only thing was severe leg cramps about a week before he was admitted to hospital, and of course the coughing up of blood. I am still trying to make sense of this whole thing!!!!!
Please could someone explain what the medication Ritixumb (hope spelling is right) is and what does it do?. We did come across this when Brandon's diagnosis was finally in, after he died i might add, and we started investigating WG.

[Barbara N]

Anne, Linda Alysia, Debra and anyone else interested, we should put our heads together and come up with a pamphlet or booklet or something that we can spread through all of the school districts, even have it in several languages. It would be great to give to doctors and have in waiting rooms. Some of these sypmptoms are noticed by teachers but they don't say anything because trhey don't know about auto-immune diesease or VF.

[drz]

In this internet age it seems the best way to reach people is on the social media. Putting the find zebra web site on many Facebook pages and blogs might be better way to promote awareness of all rare auto immune diseases. If I put in the most frequent symptoms I had Wegs came up number one or two all the time. Try and see what you get? It is intended for medical professionals but seems available currently for anyone to use but this might change.


FindZebra - The search engine for difficult medical cases

[Barbara N]

In this internet age it seems the best way to reach people is on the social media. Putting the find zebra web site on many Facebook pages and blogs might be better way to promote awareness of all rare auto immune diseases. If I put in the most frequent symptoms I had Wegs came up number one or two all the time. Try and see what you get? It is intended for medical professionals but seems available currently for anyone to use but this might change.


FindZebra - The search engine for difficult medical cases

That was great. I put in my symptoms and it came up straight away with WG