Snake Oil Salesmen

First of all, I need to say this is not addressed to or about anyone I have ever known, or had any acquaintance with on a personal level, no matter how vaguely or how well. When I use the term, "perfect stranger" I mean that in its most literal form.

People who may have read my blog for a while, may remember  IHave had the odd perfect stranger contact me, offering to "cure me" telling me they have had success with porphyria and they will send me free samples.  For anyone who feels desperate, as anyone can be prone to do in health situations such as this, it can be real bait they offer folks. Yet I have a huge problem with perfect strangers who do this.  Not just to myself, but to anyone suffering any condition known to man.

If you do a search for Alzheimers, you will find thousands and thousands of so-called "cures" out there. There is absolutely no valid reason why anyone on God's green earth should suffer the affects of Alzheimers, according to all these "cures." Yet it is one of the fastest growing conditions, because we are living longer.

For myself, when it has happened to me with porphyria, I find it insulting. As if some perfect stranger who knows nothing about me, from Adam, can have any knowledge of his this condition affects me in particular. Because no two peoples experience of it is exactly the same. What one person ingests with Porphyria, another porphyric can take in aplenty and never be made ill because of it.  There are so many variable factors.

I also would not give my mailing address out, to perfect strangers who contact me via the interent on the strength of their own recommendation. I am a disabled woman, living alone, and along with that comes a certain vulnerability.

I am not stupid. I have come to the conclusion that a condition as rare as porphyria, and as individual to the patient, probably the patients will always understand it and its affects a lot better than doctors, even so called experts.  I have expereinced this myself with geneticists and the story is common among porphyrics.

My advice to anyone with any condition, would be to not lose hope, but keep that hope realistic.  Don't hold on to grim death for a miracle cure if it is not likely.  Make the best of what you have, and go with that, and try all resonable avenues to find relief, but don't waste your money and make other people rich who have everything to gain by your illness, by  thinking or believing they can cure you, if that is not realistic.

I take supplements. And they do help my condition.  These supplements are knwon to be helpful in porphyria and their is scientific data to back it up. Anything within reason is worth a try. If there is scientific data there, then its a legitimate avenue to follow up.

Remember that your illness of affliction, is someones else meal ticket. There is no shortage of folks out there who prey on vulnerable or desperate people, trying to get money out of them when there is no real hope of there helping them.

If someone says they have a "cure" for this or that. If something such as Alzheimers or Porphyria I would ask how they know they have "cured" these conditions, since they are both very  hard to diagnose accurately,  and  many patients with many conditions never get a concrete diagnoses via lab tests, how do they know they did'n't "cure" something quite other instead?  Multiple Sclerosis is not based on any firm diagnoses or criteria. It is a set of symptoms  that fit a specfic syndrome.  There are many other conditions like that, yet MS is diagnosed without the rigorous criteria often  demanded for other conditions to get a definite diagnoses.

And lastly but not least: I would bear in mind that one thing we all have in common as soon as we are born, is that we all have to die some time.  That all our time is in God's hand,  and we cannot lengthen it by even a day without His making it happen.