The following is the original mission and philosophy of UFPH, and the Ask Emilyss Online Magazine. The domains were sold while under the control of Tim Webb, and Ryp Walters, OverCoffee Productions, Inc. Cedar Rapids, IA; while I was in a burn unit after a fire burned down the building. The by-laws weren't followed. Neither will talk. for now....liz
The mission of The United Foundation For Patient Humanities is simple, yet almost overwhelmingly complex. It must address needs that exist locally, and globally, and at the same time strive to become a learning community that will last beyond our lifetimes, in order to benefit generations to come.
Restoration of quality of life for the patient must involve restoration of well-being for loved ones as well. Only through this effort can quality be restored to the lives of all involved. UFPH is first an 'Humanitarian' effort. This is the core of the UFPH philosophy. The first step must be to take care of our wounded. Find ways to restore quality to the lives of patients who are suffering from disabling symptoms which continue, and continue, and continue, even when the disease process is considered to be mild. HCV can and does cause disabling symptoms even when the disease of the liver itself is mild! The reason for this is that HCV is actually a systemic disease, not just a liver disease; it affects all of the organ systems, including the lymphatic system where it also replicates - free from interference by the treatments being used at this time to kill it. This major problem is widely ignored, or simply unknown by treating physicians, many of whom depend on sales representatives for pharmaceutical companies for updates on treatment.
Research right now is focused heavily on 'curing' the disease itself, which of course should be the case! This, however, is leaving patients with less or barely any quality to their lives. There is little correlation between severity of the disease and severity of symptoms. While waiting to find a cure, the only way to restore quality to the lives of patients is to find ways to relieve the symptoms and get people back on their feet; or if the patient is on interferon therapy, then palliative care must by provided to relieve the debilitating side-effects, in order to help patients stay on course. If no cure is coming soon, we must find ways to help people get on with their lives, take care of their families, and if possible, to work!
There is right now a big push by the pharmaceutical industry to treat HCV with antiviral drugs, specifically 'interferon' formulas. These drugs are not appropriate for all HCV patients and sometimes make people sicker. Through the thousands of letters from patients, writing in to the 'Ask Emaliss Health Info & Support Online Magazine', as well as a recent '300-Patient Medical Care Opinion Survey' completed through UFPH, it has become clear that many patients are not being thoroughly evaluated for contraindications before being placed on 'interferon chemotherapy.'
Besides educating patients on which tests are required, Doctors may benefit from evaluation guidelines which would include testing for extra hepatic conditions, to determine if the patient has developed any of these HCV-related conditions, before starting antiviral therapy. Certain autoimmune diseases can make interferon therapy a contraindication for patients who have them. These are conditions where the immune system has become incapable of recognizing the difference between human tissue and 'foreign' particles, and thus it attacks and destroys both. Some of these conditions include autoimmune diseases of the connective tissue type, such as Rheumatoid arthritis, and some forms of muscle-degenerative diseases, lupus-like disease, type II-autoimmune disease, autoimmune hepatitis, type-II diabetes, sometimes autoimmune thyroid disease, primary biliary cirrhosis, certain types of kidney disease, certain types of vascular diseases, aplastic anemia, and others. HCV can and does both mimic and trigger many forms of autoimmune diseases, and therefore patients must be thoroughly evaluated before starting any therapy which 'revs' up the immune system -- which may already be overactive and out of control.
At this time, patients are reporting that they are not being tested for anything but liver disease despite the fact that HCV is a systemic disease and invades all organ systems; and lives mainly in the lymphatic system....the 'immune system itself' as it were. With the view that HCV is being considered a 'slowly progessive' disease, the risks of a course of interferon therapy, may far outweigh the potential long-term benefits. But if the evaluation is not done thoroughly, any patient may be at risk for further deterioration of any existing autoimmune disease.
Another concern is that many forms of autoimmune diseases present as 'sub-clinical', meaning that the patient is suffering from the symptoms, but the markers for the presence of the disease does not show up in the lab tests, until a certain state of severity has been reached. For this reason, it is particularly important for health care professionals to keep in mind that 'intuition' and 'interpretation' is of the utmost importance, and the possible existence of a new disease should not be ruled out simply because the early labs are reported as 'negative'. There is also a theory about some of these tests as often showing as 'false negative', in patients with HCV. Sometimes apparently this is true, I would, however, be cautious and get several opinions before undergoing a course of interferon, or any other form of treatment.
Many of these diseases, while possibly causing a contraindication (and possibly not) for the use of antiviral therapy, have been reported to respond very well to life-style changes and some of the more 'complimentary' or 'alternative' therapies, and other forms of traditional western therapies as well. However, patients should understand that some types of 'alternative' or 'complimentary' therapies can be just as dangerous as traditional western forms, when used without direction of a health care worker who is not only knowledgeable about these forms of treatment, but about HCV as well.
UFPH will focus on making well sourced information on these options available to those who desire it. Telling patients to 'stay away' from this or that will only serve to cut off communication between the patient and the health care worker. Patients will go somewhere else to find help if it cannot be obtained from their doctor.
As much as we appreciate that there has been little our health care providers have had to offer in terms of information and treatment options, because HCV is a relatively newly discovered disease about which little is known, when patients were asked about the quality of their medical care in the aforementioned survey, they reported in overwhelming numbers that their health care professionals failed to provide comprehensive information about treatment options, were given inadequate and inaccurate information on the disease itself, and by and large physicians attempted to block their patients from learning about HCV treatment options, especially complimentary treatment options -- by telling them things like 'stay off the internet', 'don't believe what you read on the internet'; even though 77% of respondents reported that the best information they found was on the Internet.
Another astonishing discovery from the survey was derived with a view of the symptoms. Some may argue that it could just be seen as a natural progression for a group of people between 30 and 50+ years of age (85% of women and 84% of men in the survey) to report that they suffer 'symptoms' such as joint and muscle pain, headaches, tiredness, and the wide range of other 'vague' (a medical term for non-specific) 'symptoms'. It would only be expected. And although it might be difficult to say this is not normal for people in these age groups, it would be difficult to attribute the severity of these symptoms as being normal. When you take a look at the severity of the reported symptoms, they begin to have significance. 68% of females and 55% of males reported severe, disabling fatigue. That's not normal. 48% and 36% reported severe mood swings. That's not normal. 53% and 42% reported severe muscle and joint pain. That's not normal. 58% women and 54% men reported insomnia and sleep disorders. That's not normal.
But treatment for these symptoms are not forthcoming. In fact patients report being made to feel like 'drug-seekers' when they bring up symptoms that can only be relieved by narcotic pain medication. This may in part be due to lack of training in pain management on the part of the physician, and it may be helpful for simple guidelines to be set up and provided to health care workers who are busy, and don't have the time to keep up with advances in care. Regardless, diagnostic medicine which relies wholly on laboratory measures has failed patients, especially patients with HCV and other diseases that are less well understood, because laboratory medicine does not recognize a pattern that is or may be new.
Patients, the medical community, and governmental entities must begin to cooperate with each other, to develop a non-traditional relationship, and change the status quo. The medical encounter for patients today is wrought with conflict, power struggles, emotions, and disillusionment. We need academic institutions to provide clinical training programs that do not exclude patients feelings, and what they have to say about their condition, rather than the tradition of seeing the patient as a 'disease', where the disease has become more important than the patient.
In a climate where the high-costs of medical care are climbing, patients are "rejecting the dis-empowered roll of the submissive patient"— the result is a population of patients with diseases which are not being identified, this resulting in anger from being "dismissed" by physicians. On the other hand the richness of alternative and complimentary treatment options are appearing to be a refreshing option, often offering contact with health care practitioners with sensitive and caring attitudes!
Dr. Jean Shinoda Bolen wrote in her book, 'Close to the Bone - Life-Threatening Illness and the Search for Meaning', "What we say and feel as physicians may mean everything to our patients, who often do think the worst about themselves and their condition. Recovery begins with a positive emotional response, a hope or conviction that they can get well that is communicated to the healing system of the body, and the body responds.
With disease and treatments there is often suffering, discomfort, humiliations, fear, and physical pain. Human beings can endure a lot of suffering for a reason or a cause— an effort to which they are committed or a story they believe in. It is not suffering in itself that is so hard on the soul; what is deadly is meaningless suffering and feeling powerless to make a difference. Physical and emotional pain are often amplified when such is the case. When suffering is involved, and a course of action might change a critical situation, attitude matters: 'If I believe that this might work or that what I am doing matters, I can endure it. If I believe that this will work, it may in fact make it so.' "
UFPH hopes that by identifying the needs of people affected by illness, family catastrophes, or any other types of life-altering situations to which there is no one else to anonymously seek information or consultation from due to embarrassment, reputation, social circumstances, job, homelessness, divorce, abuse, addiction, and an endless string of other reasons; in partnership with other organizations with like-minded philosophies, we will forge the sword and slay the dragon!
United Foundation for Patient Humanities, Inc. (UFPH) All rights reserved. 5o1(c)3 1996
Founder/Executive Director, Liz Webb
Founder/Executive Director, Liz Webb
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