Testimonial Category: Support H.R. 3396

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.

Please help find a cure!!!! Have you ever had the flu? . . . 24/7/365 for 8 years. There are good days and there are weeks or months that seem endless. I’ve lost 70 pounds and in a 24 hour period can fluctuate 10 or more pounds (less or more). My partner Eric and my kids and family are affected as well – I have lost jobs – I have spent days/nights in the hospital. Nausea and vomiting overcome me and eating is like playing Roulette !!!! Hear our stories – speak with our care teams and families and please see the impact this chronic rate disease has on our lives!

My story began about 8 years ago. I was overweight 185 and feeling sick. I got onto a serious health kick lost a few pounds but in the process I kept getting sicker. Who knew that the fruits and vegetables I was eating were making me sicker. Having gastroparesis is like losing your identity. Trying to explain to people that don’t understand how I can not eat certain things. Anxiety is higher than I could ever imagine. When family wants to go eat and all I can do is pray that I don’t throw up. I feel isolated from my family,friends myself. When the doctor is saying let’s keep trying and I just don’t care no more. What keeps me going is my family and close friends. Feeling tired cause you don’t have the nourishment to keep you going. And seeing my mom cry when told her there is no cure, . Praying every day that I can eat to live my life.