I am now 31 and a single mother of a 6 year old boy. I was diagnosed in 2015 and for the most part of 2014 I had to go through months and months of testing and on top of that all the different medications I’m on that changes every month. In the first two months after being diagnosed I had lost over 80 lbs because this disease starves me and everyone that has it. A few months after I was diagnosed I lost my apartment, car and was dismissed from college. My son and I had to move in with family because I was not able to take care of myself much less my son.
Now present day, I am not able to eat for days. I’m on a total of 16 medications. I have tried for disability and social security 5 times and was denied because of my age and no research so I have been going through jobs like they were candy. I am not able to keep a job. How can anyone live and survive like this? How can you let babies starve to death? Think about if your son or daughter or any family members had this and you had to watch them slowly starve to death how would you cope and feel and think? Thousands have died in vane because of negligence and malpractice and because you people won’t get on top of it in make research happen and make the medicine happen. There’s no reason or excuse as to why this disease has been around for so long with no medications in no research. And I suggest you guys get on it before more of us die for no reason or a fuss will be made because I’m sick of living like this and I know all the other people who have this are sick of living like this in the family members that have to watch their family members go through this and die.