I can't give you specific help but I can give you some suggestions. Make copies of any forms you have filled out. They sometimes ask the same question twice and you want to make sure you answer in the same way. Take names and if possible phone numbers of whom ever you speak to and keep them in a file along with the date you spoke to them and a summary of the conversation. In my experience people at social security don't know there own rules and regulations. If you are asking about a specific rule ask for a written copy of the rule from the handbook and then double check to see if they are correct. An excellent resource is www.socialsecurity.gov Get a lawyer. By law social security lawyers cannot charge you a fee unless you recieve benefits. When I got my beneifts they were allowed to charge up to 20% of your retroactive check. This was in 1992 so that figure has probably changed. I don't know what Marfan's is but if it effects your memory or comprehension I would make sure to bring someone with you to all appointments. Don't bother calling local offices chances are they will not answer the phone (at least in Broward County). Either call 1-800-772-1213 or go into the local office and speak to them in person.

Genetic diseases such as Marfan is not a Worker's Compensation issue. Worker's Compensation is an employee sustaining an injury or illness while on the job or because of their job. This sounds more like a state disability or SSI disability claim rather than Worker's Comp.