Granddaughter Has WG

[marian]

Thank you Jack and Jola for your responses. They are good responses with good advice to me.

I spent the day with Patrick and his older brother. During the past six months, Patrick has developed from being a child a little shorter than I am, 5 ft 4 in, to being a young man as tall as his older brother (6 feet).

During this past year, I have been interested in knowing how the medications for WG affect the body during such a growth spurt. I was first afraid that he might not grow, but that fear has been allayed for good. Now, my thought rests in wondering if the medications have affected the quality of the growth. I guess time will tell.

He looks fine, but I could tell by the end of the day he was feeling very tired.

My fondest wish is for some dramatic scientific development within his lifetime that will eradicate these autoimmune diseases. I really want to tell him to go into the field himself and see what he can do. His scholastic interests are all in the scientific area.

Again, thank you both for your comments. You've been very helpful.

[Doug]

Marion-

I think you are on track, Patrick is on track, yet continue to search for information. At some time Patrick will need to understand just how lucky he is, in some sense, to go through the early stages up to and including diagnosis with relatively little harm done to his body or life.

People die from this disease.

Many people on this forum would love to have Patrick's medical history, up to this point, because they have had to have kidney transplants after renal failure. They have endured "saddle nose" and have reconstructive surgery on their noses ahead of them. One Weggie is near death, perhaps has died (and I missed the news). Lives have been altered drastically.

A positive attitude is very important, perhaps a no-brainer for a young guy like Patrick. A realistic understanding of the disease process and the worst possible effects a Weggie can experience, too, is important. That knowledge is what helps the Weggie ask his or her doctors the right questions in a timely matter. That knowledge, too, helps the Weggie look dispassionately at new symptoms through the point of view of what is important for his or her doctor to know.

A long life is possible with WG, but your grandson needs to understand he is the new owner of a very high maintenance body, one that will rebel if he fails to address WG-related issues in a timely manner. As a Weggie, it is safe to say, every change in his health needs to be viewed by his doctor and him through the WG filter.

Sorry if I've become a bit preachy, Marion, but that's kind of what we do in this forum, a bit from each point of view, as we feel we can offer some insight or bit of knowledge that will help the family or Weggie (not patient-a Weggie is someone who has WG, but may or may not have active symptoms). Enough for now. I have visitors and am a bit distracted from this more important mission. (p.s. Every Weggie needs a family support person as actively involved as you! Good job!)

[cwcindylou]

Any more news on Katie?