I read this headline on Lupus Foundation site it saddened me greatly. It is so unfair... I read this and then read some of the horror stories about how SjS, SLE and many other AI's are treated by the medical community and I get angry, at the same time, I'm also grateful for the care that I've been getting.. I wish every single one of you could find caring doctors... We all deserve good medical care..
Oh, boy I could go on forever. I just thought I would put this out there for discussion...
Zero in 50. Thursday, November, 20, 2008 marked an unfortunate anniversary. It was 50 years ago the U.S. Food and Drug Administration (FDA) last approved a drug to specifically treat lupus.
Yes, it is a sad commentary of our government and doctors alike. 50 yrs is a long time to count on one medication to do the job. Although some of the old ones don't have the side effects of some of the new ones.
My hubby has Lupus and of course I have Sjs, our daughter has Fibro and polymyositis. I sure would like to see some new medications for all of us.
Take care,
Pooh
WOW Pooh! I have been terrified about my boys. Jake, my oldest started complaining over the summer that he was hurting really bad in his joints and it sacared me to death. I had him tested RIGHT AWAY! Thankfully he is ok as of now...all Labs are normal and now that the summer is over and he has grown 5 ins over the summer, I am sure it was growng pains. Im just parinoid because I wasnt dignosed until my 3oth year.
My youngest son Trevor, 6 is always complaining about his leg, arm and foot pain, but the boy grows about 1 ince every 6 weeks it seems! Hes only 6 but he is already 4'5 and wears size 10 boys because of his height not weight. When I see his pediatrician again I will ask for the blood work to be tested, I'm positive its just growning pains, but hes so young...I doubt its RA. I just cant be safe enough with them.
I cant believe they haven't come up with a new medication in 50 friggen years for Lupus. That is so sad, I know many suffer and many here too. My heart goes out. At least with the RA I have gotten better meds in the last few years. Not a lot for the SjS, but treating symptoms.
Cortnee,
I don't think I would worry about your boys. I also have 2 boys and they are 50 and 52 and very seldom sick with anything. My oldest girl is healthy also. I had my youngest daughter when I was first starting with all problems that turned out to be Sjs. I think her problems have a lot to do with my being ill at the time of her birth. It was a rough one.
I hope you enjoy those boy's of yours. They are a hand full but such a delight. I love all 4 of mine, but the boys sure were easier to raise. ;D
Hugs, Pooh
Pooh, thats just it. I was pregnant with Trevor and Jake, I wasnt dx for a LONG time. I had a very hard pregnacy with Trevor, the 6 yr old. My OBGYN kept telling me it was just pregnacny symptoms and I just kept on pushing though. With him, I had a rough start, I almost lost him and then 2 months early I had to be bed ridden because my body was trying to diliate i think because it couldnt take all the stress, I lasted another 5 weeks on bed rest with him and he was a very healthy boy...8 lbs and 10 oz. THREE weeks early no doubt! :o
Like I have said before, Im a worrier, I cant help it...its part of being a mom too!
When I had my bone marrow biopsy, the oncologist who did performed it said, " we should be thankful for all the research that is being done for aids because people doing the research are getting a better understanding of AI diseases and how to treat them." I have to admit, I have seen commercials for new meds for RA and Fibromyalgia but none for Lupus.
Collie
Its just not a fashionable or marketable cause like some of the others that get all the funding.
We need to make it more consumer friendly..... ???
Pud