I suppose it will be a while before we know anything much conclusive on Fanfaire. I also assume she is enroute home???
On the genetic/hereditary thing....I think the docs use algorithims, basing them on the incidence of given conditions. When they hear hooves they are not thinking zebras and usually they are correct. It's a horse or a mule.
Hereditary testing is going to be the new ethical dilemma. Most hereditary conditions are not curable or treatable, a few are, but in general, they are not.
Depending on which 'hereditary' disease you have, yes, there are some organizations that provide some assistance. Most hereditary disease focused on kids, and now low and behold, they are finding adult onsets in some of these hereditary disease categories, as well as symptomatic carriers, which will in the long run increase the financial burden on the non-profits set up to fund raise. It will become a competition, I suppose, for limited resources.
Having a hereditary disease can end up with discrimination in jobs, health insurance etc. I would never search for a hereditary cause unless: you are financially secure, are not actively job seeking nor intend to be, are not looking for health insurance or life insurance, and you plan to keep this out of your children's health records, as they will also be discriminated against.
There was just an article in today's paper on genealogy services that offer to trace your origin via DNA and what the implications of that can be in the future. (They do them by number and try to insure confidentiallity, however, what is confidential anymore?!?)
Small fiber neuropathy is a component of a whole lot of hereditary diseases, I was floored to find out how many. I thought I knew them all. Hereditary implies they know the gene locus, and often, in most cases, really, they do not know the gene locus. They likely will in the future, but not now. It can get you lumped into a grab bag of some hereditary disease, say, for example a muscular dystrophy (of which there are a ton). Will you get help from MDA? I don't know. One hereditary amyloidosis may be treatable by liver transplant, so, if you are idiopathic and haven't had that test, it is worthwhile to have the fat aspiration for amyloid.
CIDP, means there is an inflammatory component. Have they established that with certainty. Inflammatory to me, indicates some autoimmune process.....Are you on IVIG? If it is hereditary, IVIG is likely not an option. Braces, orthotics and assistive devices are the option.
I agree that CIDP is also getting to be a grab bag of conditions...but I am assuming, that the 'inflammatory' in the diagnosis, means the docs have established that inflammation of some kind is hurting the nerves. I hope they came to that conclusion with a degree of certainty.
They can't just do blood tests or cheek swabs and check the entire genome for mutations.....it is immense. If you have a ball park idea, then you may get some other testing...but you have to have a ball park idea of what that genetic mutation could be....family history, ethnicity, and an history of a population that dwelled in some specific area that is associted with some specific diseases helps. Some folks just have no records to trace, others are more lucky.
The genealogy swabs they do for shared ancestry with other people signed onto genealogy websites, I suppose is a long shot possibility to help with ethnicity....but I don't know. I think they are more for hobby purposes.
Really examine family history if you think it could be hereditary....and have an idea of what diseases or disease family it could be leaning toward.
I am a long way from having any hereditary basis established for my own condition, and it is possible it may not be one. It is just one area to consider when there is nothing left but zebras....when the horse and pony show is all over and done with.