I am 32 years old with Hirschsprung's Disease. I ws diagnosed when I was 4 years old. Have had 21 operations. Depending on the results of the CT Scan I had a couple days ago, it will soon be operation number 22. I have a J Pouch now. Had my last operation a couple years ago. It was a subtotal colectomy/ J Pouch/ileostomy. Had the ileostomy reversed about a year and a half ago. But now I am back to having major problems with constipation.
I have spent about 80% of my life in the hospital. The nurses told my Mom when I was a child that she should file disability. But she didn't. It wasn't until I was about 26 that I filed. Got turned down and appealed the decision. Went before the judge and got my reward letter about 6 months later. So I have been on disability about two and a half years. It was an almost 4 year process from the time I filed to the time I got accepted.
What won my case is my OVERALL battle. My lawyers presented ALL my medical records from the age of 4 all the way to the present. They were able to prove that my condition was a lifelong battle that not only affected work, but earlier when I was a kid I had a very poor school attendence record. That's because when I get sick, I stay sick for years. Then I have a time when I'm well. Then it starts all over again. It's almost impossible to hold down a job when you can't commit to actually being there. Attendence is very important to maintaining any job. They also looked at my erratic work history. They also had a "work expert" at my hearing and after listening to my testimony, agreed I couldn't hold down a job.
If you file, good luck and HAVE PATIENCE. It's a long process.