Pingback: OTHER CONDITIONS!!! | mshuggers
Hi there, I grew up with a complicated Congenital Heart Defect, Tricuspid, Atresia, Atrial & Vent, with Septal Defects. I believe this to be ASD & VSD. I also had polycythemia and PH. You can read my whole story at http://www.northof50.com in the Feb. 2011 issue.
It is a very rare disease that is genetic, but not hereditary. A gene mutates after birth. Muscle fibers and lymph vessels infiltrate the lungs and form cysts and destroy t he lung tissue. There is one drug that seems to help some people but it has a tremendous number of side effects and does not help everyone. I never tried it because I did not want to take the risk of the side effects. I am on oxygen 24/7 but I go out shopping, and to concerts that I want but it really drains me and there are many days I just stay at home, If you want to know more, you can go to “www.thelamfoundation.org”. It is an orphan disease so we hardly get any funding. If you would like to make a small donation, there is a page on t he site, even if it is only the equivelent of $5. it would be wonderful, and if you would do it in my name it would be greatfully appreciated. I cannot believe I just did that. I have never asked anyone to donate before I guess I am getting desperate. The only possible treatment is a lung transplant, but then women deal with the problem of rejection for the rest of their lives. Lam can also come back into the transplanted lung. It is trading one set of problems for another. I found out about a month ago that there is something seriously wrong with MY immune system and it is acting like I have had a transplant and no one knows why, and because of the dangers of Lam they do not know how or if they should treat me.
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