Thank you for the replies LIT LOVE and Jo*mar.

I have another question. Is it true that they go by the rules from when you were first awarded rather than the current rules? Is the main goal they look out for a matter of whether or not your condition seems to be improving?

Is it more in my favor since it's an inherited condition (permanent)?

I don't remember ever receiving a CDR since I first receive SSDI since I was 18. That may mean that I have no point of reference. Is this bad or do they periodically check my medical records on their own?

I have also never been employed. Does this hurt or help my chances?

Thanks again.

Was your condition originally a listed impairment and no longer is? If there is a different rule change you're concerned about, please be more specific. For those that have been effected by changes in SS policy they seem to be given long form CDR right off the bat.

SS does generally expect you to see a doctor regularly, and if you have infections several times a year I would assume that would apply to you. They expect you to be to compliant with a doctor's treatment plan, but they won't request medical records for a short form, only if you undergo a long form CDR.

Working even part time can lead to more frequent reviews.

If you are interested in working from home (and capable), you might consider the Ticket To Work program.

You have to balance what makes sense as far as potentially risking your SS benefits and the financial reward of attempting to find a job that can accommodate your special needs.

I have a rare immunodeficiency disorder that was inherited from my mother. It largely affects my CD4 count. It can fluctuate from normal to well below normal and it is pretty random. It's also a rare condition and is often difficult to describe to doctors since it isn't categorized. About a year ago I had a bad case of shingles then a year later a small case. I can sometimes get oral thrush 6 or more times a year and feel tired. I had colitis that was almost deadly about 8 years ago and I randomly get candidiasis of the throat. If I get, say the flu, it will last me 2x longer. Basically, my immune system doesn't increase when infected. If I don't get treated right away my immune system would spiral out of control and bring on more infections.

According to the SSA disability rules, it seems that if I have a number of "manifestations" then I qualify. I am worried since I have good years and bad years that it might cause me to receive a long form.

As far as treatment, they looked into giving me an immune transplant but later explained to me that my immune system is too matured for a successful transplant. I could also receive hemoglobin injections but my doctor is unsure of this as well. In my case, it's basically treat the infections as they come. It's possible that in 5 years time some major medical change can occur and a treatment plan may be very effective to me but thus far it's treat as I go.

I received the short form and I think I might be in the "low" category. But I concerned what is meant by "recent" doctor visits and if it always has to be several.

Any of us on SSI or SSDI should be prepared to undergo the CDR process as often as once a year or if you're not expected to recover every 7 years or so.

What you're describing doesn't sound like you'd have an easy time being approved for SSI/SSDI if you had a new application. You'd certainly have to stress the issue of environment...

Undergoing the long form CDR is often compared to the original application process. I'm not really sure how you'd fare if you received the long form CDR today.

Qualifying for SSI/SSDI is kind of a strange thing, because some of the rules are terribly antiquated. Using the Dictionary of Occupational Titles is crazy IMO because technology has changed job descriptions so drastically that few match them as written. (The DOT was last updated in the early 1990's.)

It is not at all uncommon for employees to telecommute today, but SS doesn't currently factor in those jobs. They will likely change that policy at some point.

You might consider utilizing the Ticket To Work program: ttp://www.ssa.gov/work/overview.html#a0=0

If your health worsens and you need to go back on SSI/SSDI you aren't required to reapply in the first 5 years I believe.

The Federal government recruits disabled workers: http://www.opm.gov/policy-data-overs...ty-employment/

Let's say you could get a job answering calls for a government program, you'd be earning much more than your current benefits (I'm assuming you receive SSI from what you've said) but you'd also be earning credits for SSDI in case your health becomes worse again later on.