Folks with rare, progressive, terminal diseases are often desperate to find some glimmer of hope for a cure. I looked to clinical drug trials for hope, and lifestyle changes to improve my quality of life. My IPF had progressed too far to be accepted into most trials, and I was not the perfect patient for the one trial close by, in Oklahoma, that would take people with more advanced disease. My final option was the lung transplant, and I am very fortunate to have been placed on the list and offered new lungs.
There is a seedy underbelly of humanity (and I do use that term loosely here) that will seek to profit off of desperation. These people and organizations are scum of the earth. You will find them posting in internet communities that are dedicated to supporting the patients and caregivers of disease. They are also easily found when searching for information on rare diseases. If they happen to get ahold of a patients email address, they fill the in-box with seductive promises of health and well being. These miracle cures can cost hundreds, even thousands, of dollars a month. This is money that most cannot afford to be spending, especially spending on false hope. Often the patient can offset the cost of their 'treatment' by referring others to the scammer. Kind of like multi-level marketing for snake oil.
I recently had one of these scammers post a comment here on the blog. I will not be party to promoting disinformation like that. I did allow this one comment to stay as I wanted to address the issue. All future comments like this will be deleted without comment or explanation.
Here is the comment and my response:
Joan DavidsJuly 30, 2016 at 7:10 PM(MUST READ: HOW I GOT CURED FROM PULMONARY FIBROSIS)
I was diagnosed of Pulonary fibrosis in March 2014, my doctor told me it has no permanent cure, i was given medication to ease the situation, this affected me so badly as i constantly go short of breath, this continued till a friend of mine Karen told me about Ejiro Herbal Clinic were she bought herbal medicine that totally cured her mother of pulmonary firbosis, I contacted this herbal clinic via their email and purchasd the pulomnary fibrosis herbal remedy, i received the herbal medicine within 7 days and when i started usage my lungs gradually got better until i even forgot i had pulmonary fibrosis, i went back to my familly doctor to test for idiopathic pulmonary fibrosis my doctor confirmed my lungs tissue were 98% repaired. Contact this herbal clinic via their email - deleted
JRJuly 30, 2016 at 8:57 PMJoan, I have never understood the depravity of individuals who prey upon people with terminal illnesses. Your miricle clinic supposedly cures everything from ALS to COPD to emphysema to Parkinson's and now IPF. During my tenure as an IPF patient I was inundated by scum like you who sought to profit off my presumed desperation. I have seen fiends and acquaintances spend money they could not afford on the false hope provided by reprobates such as yourself. They died taking these snake oils, and left their families worse off for it.I am a big fan of people making money. Heck, I like making money when I can and Lord knows I could really use a bit more of it. But people like Joan here don't just disgust me, they really piss me off. These are much worse that the Nigerian scammers who prey upon an individuals greed, they go after the hopeless.
I really hope there is a hell, one with a special place for people like you.
Don't bother replying, or commenting on other threads. Comments promoting snake oils will be deleted w/o comment from now on
Just like with the Nigerian scam emails, there are hints in the comments and emails that this comment is just meant to swindle money from the sick. I really don't want to point out the obvious as it may help scammers in the future, but if you know your disease, you can find the errors in the message. It is very obvious that this "Joan" has not been seen for pulmonary fibrosis.
No, a Japanese silkworm enzyme or a Himalayan fungus is not going to cure your fibrosis. No, the drug companies are not suppressing a natural cure so they can sell their high dollar medications. Before putting your family into debt searching for the miracle cure, remember that quackery is alive and well on the internet. Do your due diligence and do background checks on the treatments offered.
There are quite a few very interesting clinical trials recruiting IPF patients that are worth looking into. One is a Study of Autologous Mesenchymal Stem Cells to Treat Idiopathic Pulmonary Fibrosis. This is not the same as the Stem Cell clinics that seem to be popping up all over the place. I would approach those with a great deal of caution.
Don't get me wrong. There are supplements and lifestyle changes that can improve quality of life for many people. The difference is these are not going to empty your bank account and you don't need to get them from a special lab or clinic.
We have a long way to go in improving the diagnosing and treatment of Idiopathic Pulmonary Fibrosis and clinical trials really are our best hope for the future of treatment. Right now we have two treatments that slow the progression of disease for many people. Please, look into these before sending your money off to some grifter who is just trying to separate you from your money.
Edit 5/7/18 - You would not believe how many spam comments this post has generated. Many of them begin with "Glory be to..." the go on to proclaim how the commenter has been cured of AIDS, IPF, Lung Cancer, Herpes and a plethora of other ailments. These folks obviously didn't read the post, just searched some keywords. This is both irritating and disheartening. It really pisses me off that so many people are out to prey upon the desperation of the chronically ill, and saddening that it is profitable for them.
Scams are everywhere. Last time I was in the hospital I received a call from "Blue Cross Blue Shield" about my account. I don't have BCBX but they had the last 4 digits of an old plan. They were trying to "upgrade" my policy. When I mentioned that I no longer had BCBX, they said, "Oh, I see you have UCH now". Heavy sigh. They were obviously a scam from the first sentence out of their mouths, but I kept talking for a bit until I couldn't take any more. I'm sure it was just a coincidence that I was in the hospital when they called, but they are still scum.
Be careful out there.