How quickly after diagnosis has the disease spread usually for sufferers?
The disease is usually in an advanced stage before it is diagnosed. It’s called a “rare” disease but it really isn’t all that rare. It is actually an"orphaned" disease because most drs don’t take the time to learn anything about it.
Well it’s UP TO OURSELVES to make more of the right kind of noise so the medical science community becomes aware of the condition in a way they are motivated to study it and learn how at least to manage the palliation of the evolving pain, or maybe even figure out better ways to study it, or if very clever, some group could put together coherent proposals for study models applicable to “neoplastic” diseases in general–which would get MUCH more attention.
Having had the disease many years, I only recently found out ONE OF THE REASONS why this invasive, proliferating, crippling and life-altering condition is relegated to the sidelines. Turns out that the definition of a “benign” tumor, among other things, is that it does not INVADE tissue or organs in its proximity, but just sort of “stops” at the borders of where it is contained. But since our little (and big) ‘benign’ Dercum/s lipomas proliferate at such an aggressive level, cannot be cured or even slowed up by any widely known treatment, and multiply (you can’t say metastasize!) in such an invasive manner WITHIN the interstitial layer (between the skin and the organ systems), and apparently interact with both the lymphatic system and nerves in the chemistry within the interstitial tissue(sorry so long!)…
MAYBE doctors could invent a term stronger that captures the uncontrollable proliferation of tumors and “sick” tissue, and not the same as ‘metastesis’, that would express why Dercum’s disease is NOT to be dismissed as a benign tumor condition.
As one’s body skin surface becomes progressively more isolated and distorted by tumor growth, and the normal exchange of substances and the function of the interstitial tissue becomes disrupted to the point of crippling the victim and likely shortening lifespan (has anybody bothered to measure this?), to the lipoma sufferer this is NOT a benign disease at all.
It’s more like an extended period of accelerating torture as if one is living inside some kind of medieval torture chamber we see in museums of man’s inhumanity to man.
Indeed it is an abdication of the medical oath to ignore from ignorance - because of a terminology problem- the terrifying situation of the Dercum’s patient, whose emotional stability is already compromised by some or other unknown aspect of the condition–to be dismissed as a hypochondriac or borderline psychotic because they complain of pain and strange seemingly unrelated sufferings associated with their “benign tumors”.
The magic word is “benign”
It’s the WRONG WORD
, because the right word has not been defined yet
, to take this disease class OUT of the “orphan” class. So what word between benign and malignant fits “our” tumors and appropriatly conveys the magnitude and illogically changing nature of our chronic suffering?
Happy New Year all, maybe we get lucky in 2013. SF