We have to apologize for this newsletter being behind schedule. Due to some major computer problems with our main computer, we were delayed from our normal April release.

This did not affect our website of course as that is run on a separate computer system sponsored by NEPC, but it did delay this publication. Our next newsletter will come out on schedule at the end of September or the beginning of October.

We had many people write us asking if they were still on our mailing list since they hadn’t heard from us. Rest assured everyone is still on it :) We have taken steps to ensure this won’t happen again and will soon be all caught up. Thanks :)

We will be holding our RSDS/Chronic Pain Conference on October 29th and 30th in 2004 in Portland, Maine.

We are still working on the details and schedules for Friday evening, Saturday, and Saturday evening. Currently we have three speakers set up, including Dr Harbut who will speak on the Low-Dose Ketamine Treatment.

We also have a Lawyer who will speak on legal issues related to disability such as SSD, WC, and personal injury as it pertains to RSD and other Chronic Pain diseases.

Normally our next Conference would have been this November but this year we decided to target Drs and have participated in a major Pain Conference for Medical Professionals and have one more this fall. Next year, 2004, it is back to our normal Conference and we are VERY excited! We expect it to be the best ever J

For more information on our Conference as well as other upcoming Seminars/Conferences around the country, please check on our website. If your group is holding one and would like us to help spread the word, send us the details.

Does your company have a "Matching Gift Program"? It is a great way to make every dollar of your donations count twice. If you would like information on how to get this program going where you work, just give us a call here, 207-583-4589.

Also, please remember us in your Will. Some people even stipulate that they wish donations made in lieu of flowers. It is a way to continue giving to those in need.

There is a new treatment being tried on RSDS/CRPS patients and it is called the Low-Dose Ketamine Infusion. It has brought new hope to the RSD Community!

It was developed by Dr Harbut in the United States, in conjunction with Dr Correll in Australia. Dr Ronald Harbut resides and practices in Page, Arizona. He was kind enough to allow us an interview to help explain what this treatment is all about. Part one is in this newsletter and Part 2 will be in the October Newsletter.

Dr Harbut has gone to Philadelphia to conduct training in the technique for Dr Schwartzman and his Associates. We hope that within the next year or two, Drs. all over the country will learn how to perform this treatment!

You can go to our website for more information on the technique and some stories from the patients who have had it done. Understand though that this treatment must be taught and should not be performed after simply reading the articles on the website.

Where is Page, Arizona?

Page is the principal city serving the greater Lake Powell, Arizona region. The population of our community is about 12,000. Lake Powell is one of the largest man made lakes in North America.

My interest in medicine continued and I completed medical school at the Finch University/Chicago Medical School, were I was attracted to the specialty of anesthesiology during my surgical rotation. Anesthesiology residency was a natural next step for me.

I love my work as an anesthesiologist, treating acute pain in the operating room, emergency department, and obstetrical labor and delivery suites. I also treat a good deal of chronic back pain with epidural steroid injections as an anesthesiologist.

After several years as an anesthesiologist, my interest in pain medicine as a sub-specialty practice blossomed to the point where I pursued additional education, and entered the Pain Management Fellowship at Mayo Clinic Scottsdale.

Both my pharmacy education and Ph.D. training have helped to give me a unique perspective regarding the pharmacological approach to the research and treatment of pain.

That must be a great asset in Pain Management!

Absolutely.

What types of patients/conditions do you see?

As an anesthesiologist and a pain management physician, I see many types of patients with pain. This includes patients with acute post surgical pain as well as those with more chronic conditions such as low back pain, sciatica, or occipital neuralgia

What got you interested in RSDS/CRPS?

I remember once trying to help a patient who had horribly debilitating chronic burning pain all over his body. Nobody could help him with conventional treatments. That inability to help this individual initiated my awareness of RSD and the sort of suffering that RSD patients experience, as well as the associated suffering their loved one's go through.

It is a very distressful situation for all involved. Yet, at that time I knew of nothing new or of anything that was uniquely curative. Unfortunately, it seemed that for many the best that conventional therapy could offer at the time was just trying to make the pain more bearable.

How did you come to put together the Low-Dose Ketamine Treatment?

In 1999, I got an amazing opportunity to work as an anesthesiologist in an under-served area of Australia - far up the northeastern coast of Queensland on the Great Barrier Reef. Not many Australian anesthesiologists choose to work there, as it is somewhat removed from the capital cities and it is very hot. However, I really wanted to do this and offered to help out during a sudden need that occurred there in July of that year.

Once there, I thoroughly enjoyed the people, culture, and location. It was my pleasure to be there. While there, however, I discovered the pioneering work being performed by Dr. Graeme Correll, an Australian anesthesiologist who also had spent a great deal of time working as a Christian Medical Missionary in the jungles of Papua/New Guinea.

Dr. Correll was "dabbling," as he called it, in trying to see if low dose continuous infusions of ketamine could help people suffering from chronic pain. Over the years, he tried very hard to develop this idea and started having many good successes.

Unfortunately, his early pioneering work was largely ignored and rejected. This rejection really exasperated me as I felt such dismissal suggested an unfortunate inability by some individuals to think "outside the box." At that point, and after further conversation with Graeme, we began to work together and I began a serious effort to help Dr. Correll develop his ideas and hopefully improve upon them.

Is the low-dose ketamine technique different from the "coma" technique? If so, how?

I first heard about the coma technique shortly after I carried out my first successful treatment of RSD using what has come to be known as the "awake" technique.

The abstract describes that the doses infused are slowly increased up to a maximum of 7 mg/kg/hr (about 350-700 mg/hr, assuming a patient weight of about 50-100 kg). The doses that Dr. Correll and I use do not cause unconsciousness. Thus, this is why the "low-dose" technique that Correll discovered is now called the "awake" technique.

What is most important in talking about these different techniques, however, is that physicians the world over have been grappling with this miserable condition called RSD for years and have been trying their best to find a cure. Everywhere, the frontier has been and is still being pushed. We still need a better way to deal with this condition.

As a closing comment, let me restate that, conventional therapies do not help all individuals suffering from intractable RSD. We need new ideas. We need new thinking. We need to try to help more of the patients who have been left behind by convention.

How can we achieve this? We need to be able to think outside the box -- having said that, let me immediately add that we need to do this thoughtfully and carefully. We must try to maximize our efforts to help while yet trying to minimize any risk or harm that might result from our efforts.

In our next Newsletter, coming at the beginning of October, we will have Part Two of the interview with Dr Ronald Harbut.

Some of the questions he will be answering are;

1) What type of patient can best be helped by this treatment? CRPS Type I, Type II, or both?

2) What can a patient expect if treatment is successful?

3) How many patients have been helped by this treatment so far?

4) When do you expect the FDA to rule on the approval of the Low Dose Ketamine treatment?

5) Why do you think this treatment works?

6) Do you feel this treatment might be used for other diseases?

7) Does this treatment, for the patients for whom it successfully reduces or eliminates their pain, relieve the other symptoms of RSDS/CRPS? Such as burning, allodynia, memory-loss, insomnia, problems concentrating, etc.?

8) Will other Drs be performing this treatment soon?

9) What should patients, who are interested in having this treatment tried, do next?

10) Should the patient or their Dr. contact you if they are interested in this treatment?

So be sure to return and check out the next Newsletter to get the answers to these questions as well as some other interesting items!

Bosses of a publishing firm are trying to work out why no one noticed that one of their employees had been sitting dead at his desk for FIVE DAYS before anyone asked if he was feeling okay.

George Turklebaum, 51,who had been employed as a proof-reader at a New York firm for 30 years, had a heart attack in the open-plan office he shared with 23
other workers.

He quietly passed away on Monday, but nobody noticed until Saturday morning when an office cleaner asked why he was still working during the weekend. His boss Elliot Wachiaski said "George was always the first guy in each morning and the last to leave at night, so no one found it unusual that he was in the same position all that time and didn't say anything. He was always absorbed in his work and kept much to himself."
A post mortem examination revealed that he had been dead for five days after suffering a coronary. Ironically, George was proofreading manuscripts of medical textbooks
when he died.

I want to share information on a wonderful new pain treatment for those of us with RSDS/CRPS. This is a treatment I myself just went through at the end of March. It reduced my RSD pain and my burning/allodynia pain nearly 80%! It has remained there ever since. I pray it stays always!

I was Dr Harbut's, (Page, Arizona), sixth patient who tried the Low-Dose Ketamine Treatment. I feel truly blessed with the success we achieved in my case. Prior to the treatment my RSD pain level was about a 9.5 on a scale of zero to ten. After the treatment it was a 2!

Let me preface my story with the following. I am not a Dr. I am not a Medical Professional of any kind. I am simply a patient. I have had RSDS/CRPS since 1974; nearly thirty years. I have RSD full body, from my eyes to my feet.

Elsewhere on this website you can find "my story", if you are interested. Also, many of the articles in the section "Coping with Chronic Pain" on our website (http://www.rsdhope.org/ShowPage.asp?PAGE_ID=1 ) describe the way I approach the disease and my coping mechanisms. Maybe one or more of those stories will help you cope as well.

In addition to the RSDS, I also suffer from Fibromyalgia, Failed Back Syndrome, Sciatica -both legs, Degenerative Disc Disease, among other things. The Low-Dose Ketamine treatment did not affect any of the other disease described above, NOR did we expect it to.

My Hope going into the treatment was to have SOME of my RSD pain reduced and SOME of the burning/allodynia component reduced. Even if it had been 25 or 50% I would have considered it a rousing success and felt incredibly blessed.

NEVER DID I EXPECT THE REDUCTION IN PAIN THAT I GOT!

The reduction was in both the overall agonizing RSD pain and also the burning/sensitivity (allodynia) pain.

The treatment is called; "LOW DOSE KETAMINE, THE AWAKE TECHNIQUE". It is the technique Dr Harbut was just discussing.

Many people have asked me about this procedure and what it is and what it is not. Remember I am not a Dr or Medical Professional. Here is what I believe to be true.

1) It is not a cure for RSDS/CRPS.

2) It is not invasive; no surgery, no implants, no cuts.

3) It is not a machine. No worrying about settings.

4) It is not a topical cream or anything of that sort.

5) It is not the Ketamine coma technique being performed in Germany.

6) It is not the "out-patient Ketamine Treatment".

7) It should not be performed by Drs who have not been trained in it. Simply reading the information on the website is not enough to make it be safe and successful.

8) It is not going to work for everyone who tries it.

1) It is a treatment meant to reduce or eliminate the main pain of RSD as well as the burning/allodynia pain, not the limbic system changes that occur with RSD such as memory problems, insomnia, etc.

2) It is simply an infusion. Medication is pumped into your arm. Not just Ketamine but a combination of medications. This combination is an important factor in keeping the pain away.

3) The medication is infused for a period of days in the Hospital. How many days depends on the patient and how well it is working but it is never more than 5 days. This is specifically stated to you ahead of time. It is stopped at the discretion of the Dr.

4) You are awake for the treatment; except of course at night when you sleep, lol.

5) It is done on an in-patient basis.

6) Is this permanent? Too soon to tell. We hope it is.

The first person who had the treatment done, Katherine, has been 20+ months so far with no pain returning. Most with reduced pain have stayed that way.

Considering I have had it for 29 years, to have my pain be decreased by that much is a blessing from above for me. I am very thankful.

Strangely enough, while it does work so well for the pain, it does not seem to improve some of the other symptoms of RSD such as short-term memory loss, insomnia, inability to concentrate, and some of the other limbic system changes. At least not on the patients I have spoken with, which is most.

Why? I don't know. But it is a whole lot easier to deal with those symptoms with most of the agonizing pain and burning gone.

I was in the Hospital from Monday morning until early Thursday evening. The infusion ran for a total of 73 hours. After being seen on Friday afternoon by Dr Harbut I was released to return home.

The Hospital staff, especially the Nurses, were fantastic. They were very caring and enthusiastic. They were there every time I needed them with help or an encouraging word.

This treatment may not suit everyone but for myself and others it has been a Godsend. I am very thankful to Dr Harbut and to my parents who helped make my treatment possible.

I am also grateful to Katherine, Cheryl, and the other patients who tried this treatment before me and set the stage. I hope that we are just the tip of the iceberg and that many, many more patients will be helped by this procedure in the future.

Peace and freedom from pain, Keith

If you are not a Nurse, perhaps this can help you understand their mindset and "questionable" mental status/insanity, most of the time they function. In spite of this sick sense of humor, written by Nurses, they are fairly normal, act responsibly, and are a patient’s blessing. Their work is as tireless as their caring is endless :)

The nurses amongst us can relate to this:

Q: Did you hear about the nurse who died and went straight to hell?
A: It took her two weeks to realize that she wasn't at work anymore!

You know you're a nurse if......

1) You believe every patient needs TLC: Thorazine, Lorazepam and Compazine.
2) You would like to meet the inventor of the call light in a dark alley one night.
3) You believe not all patients are annoying … some are unconscious.
4) Your sense of humor seems to get more "warped" each year.
5) You know the phone numbers of every late night food delivery place in town by heart.
6) You can only tell time with a 24 hour clock
7) Almost everything can seem humorous...eventually.
8) When asked, "What color is the patient's diarrhea?", you show them your shoes.
9) Every time you walk, you make a rattling noise because of all the scissors and clamps in your pockets.
10) You can tell the pharmacist more about the medicines he is dispensing you than he can.

11) You carry "spare" meds in your pocket rather than wait for pharmacy to deliver.
12) You refuse to watch ER because it's too much like the real thing and triggers "flash backs."
13) You check the caller ID when the phone rings on your day off to see if someone from the hospital is trying to call to ask you to work.
14) You've been telling stories in a restaurant and had someone at another table throw up.
15) You notice that you use more four letter words now than before you became a nurse.
16) Every time someone asks you for a pen, you can find at least three of them on you.
17) You can intubate your friends at parties.
18) You don't get excited about blood loss...unless it's your own.
19) You live by the motto, "To be right is only half the battle, to convince the physician is more difficult."
20) You've basted your Thanksgiving turkey with a Toomey syringe.

21) You've told a confused patient your name was that of your coworker and to HOLLER if they need help. (been there done that)
22) Eating microwave popcorn out a clean bedpan is perfectly natural.
23) Your bladder can expand to the same size as a Winnebago's water tank.
24) When checking the level of orientation of a patient, you aren't sure of the answer.
25) You find yourself checking out other customer's arm veins in grocery waiting lines.
26) You can sleep soundly at the hospital cafeteria table during dinner break, sitting up and not be embarrassed when you wake up.
27) You avoid unhealthy looking shoppers in the mall for fear that they'll drop near you and you'll have to do CPR on your day off.
28) You've sworn you're going to have "NO CODE" tattooed on your chest.

FDA Proposals for Medication Bar Coding and

HHS Secretary Tommy G. Thompson today announced two proposed rules from the Food and Drug Administration (FDA) that will improve patient safety by reducing medication errors and by more quickly identifying potential errors that may occur. The new rules, part of FDA's strategic initiative to reduce adverse events involving the products it regulates, will require bar coding on medications and will improve reporting requirements for safety problems involving medicines.

"These proposals are key steps in reducing medication problems through using state-of-the-art technology," Secretary Thompson said.

"Today's actions are the start of a comprehensive strategy to build a medical patient protection system for the 21st Century," said FDA Commissioner, Mark B. McClellan, M.D., Ph.D.

One of the major initiatives announced today -- the proposed requirement for bar codes -- adopts a technology that is widely used in other industries to reduce the number of medication errors in hospitals and other health care settings.

The required bar code would contain the National Drug Code (NDC=) number, unique identifying information about the drug that is to be dispensed to the patient, in a linear bar code as part of the drug label.

The proposed design would allow manufacturers to include additional information, and more information could also be added to the bar code standards as information technology progresses.

When used with bar code scanners and computerized patient information systems, bar code technology
can prevent many medication errors including administering the wrong drug, administering a drug to a patient who is known to be allergic, administering the wrong dose, administering the drug at the wrong time, or using the wrong route of administration (for example, by injection rather than by mouth).

In addition to the human suffering they cause, medication errors represent a significant economic cost to the United States. According to the Institute of Medicine and other experts, thousands of deaths and millions of hospitalizations result from medication errors. The expected annual benefit from preventing adverse events due to medication errors is equivalent to $3.9 billion.

The proposed rule would apply to all prescription drug products, including biological products and vaccines (except for physician samples), and OTC drugs that are commonly used in hospitals and dispensed in a hospital pursuant to an order.

Standardized bar codes would also be required on prescription drug products used in other settings such as retail pharmacies.

The second action the agency is announcing, the proposed revamping of safety reporting requirements, aims to enhance the agency's ability to effectively monitor and improve the safe use of medications including drugs and biologics.

The proposed rule would:

- Improve the quality and usefulness of safety reports submitted to the agency as well as facilitating the consistency of safety reporting around the world.
- Require the submission of all suspected serious reactions for blood and blood products on the market.
- Require reports on important potential medication errors.

These steps would provide FDA with more useful, timely, and extensive information to support quicker, more effective actions by the agency to prevent adverse events.

To expedite the agency's review of and response to medication errors, the proposed amendments would require companies to submit to FDA, within 15
calendar days, all reports they receive of actual and potential (i.e., "near miss") medication errors occurring in the United States.

An example of a potential medication error - from the standpoint of the rule - is a situation in which a pharmacist selects the wrong medication because of a similar sounding name but catches the error prior to dispensing the medication. In this case, no patient was the recipient of an actual
medication error.

However, if the pharmacist reported what happened in an effort to alert the company to this potential problem, then the company would be required to report the "potential" (or "near miss") medication error to FDA.

In this manner, FDA could work with the company to make changes to help ensure that actual medication errors because of this problem do not happen.

The proposal would also raise the quality and consistency of safety reports by requiring the use of internationally agreed definitions reporting formats, and other safety reporting standards.

If the proposed safety reporting standards are implemented, companies will be able to devote their resources to preparing a single, high-quality report for submission to all major regulatory agencies around the world.

Under this proposal, blood establishments would be required to submit to FDA reports of all suspected serious reactions, not just fatalities, which currently is the case.

The proposal refines and clarifies the expectations for the amounts of data needed in various safety reports. The net effect will be to lessen some of industry's reporting burdens - especially for certain non-serious suspected adverse reactions - thus allowing companies to focus their resources on producing quality reports of serious suspected adverse reactions which potentially have a much greater public health impact.

Both proposed rules, as well as other material related to today's announcement, can be found on FDA's website at http://www.fda.gov/oc/initiatives/barcode-sadr/

FDA invites written comments from the public on these proposed rules to the Dockets Management Branch (HFA-305), Food and Drug Administration, 5630 Fishers Lane, Room 1061, Rockville, Md.=A0 20852.

In coordination with today's actions, FDA is using emerging technologies such as automatic reporting systems to promote greater patient safety.

By capturing important risk information automatically using modern clinical information systems, FDA can augment the information it will obtain through its mandatory adverse event reporting programs.

These automatic programs are designed to expand with the use of sophisticated electronic information systems in health care, and in many cases will be able to provide results and safety guidance in electronic form to participating providers and organizations based on the electronic data provide

Specifically, FDA is involved in a public-private collaboration called "Connecting for Health," aimed at improving quality and patient safety through the adoption of clinical data standards and compatible health
information systems.

Under this program, the FDA will also participate in a national pilot project that will involve several hospitals, such as New York Presbyterian, along with information technology suppliers, such as IBM, that will explore real-time identification of adverse events associated with medical products.
The agency also plans to expand its Internet-based pilot program (MedSun) to work collaboratively with more than 100 health care facilities across the country to help ensure the safe use of medical products, and will expand its collaborative electronic program on medical device safety.

In addition, FDA recently developed a partnership with a managed care organization and with the Centers for Medicare & Medicaid Services which will allow FDA to access high-quality data that can be used to analyze safety concerns in large patient populations.

Note: All HHS press releases, fact sheets and other press materials are available at www.hhs.gov/news

Congressman Mike Rogers (R-MI) introduced in the House, "H.R. 1863, the Pain Care Policy Act of 2003".

This bill would provide important federal recognition of pain as a priority public health problem in the United States, and "would authorize additional federal resources for pain and palliative care research, professional and patient education, public awareness, and professional training".

In addition, it has provisions to improve access to appropriate diagnosis and treatment for pain in federally-financed health care facilities and federally-financed managed care programs.

Please ask your Congressional Representatives to be a Co-Sponsor of this Legislation. Have them contact Congressman Rogers Legislative Director. Heather Keiser, at 202-225-4872.

We join with many other Pain Organizations of all types in supporting this piece of Legislation. Help us get it passed!

If you would like to check out the Bill on-line, please go to http://Thomas.loc.gov/

Authorizes a White House Conference on Pain Care.

- increase the awareness of pain as a significant public health problem;

- assess the adequacy of diagnosis and treatment of pain care;

- identify barriers to appropriate pain care; and

- establish an agenda for the Decade of Pain Control and Research, stimulating public and private sector efforts to improve the state of pain care research, education, and clinical care by the year 2010.

- Supporting clinical and basic science research into the causes and effective treatments for pain;

- Initiating a comprehensive program of collaborative interdisciplinary research among schools, colleges, and universities;

- Establishing a national agenda for conducting and supporting pain research, including acute pain; cancer and HIV-related pain; chronic and intractable pain; and other painful conditions;

- Coordinating all pain research and related activities being carried out at NIH; and

- Issuing an annual report on the state of public and private funding for pain care research.

- the significance of pain as a national public health problem;

- the risks to patients if pain is not properly treated;

- the availability of treatment options for different types of pain;

- the patient’s right to have pain assessed and treated across health care settings; and

Requires the Secretary of Defense to develop and implement a pain care initiative in all military health care facilities to ensure that all personnel receiving treatment in military health care facilities are assessed for pain at the time of admission or initial treatment, and that they receive appropriate pain care.

Requires CMS to submit to Congress an annual report on Medicare expenditures for pain and palliative care.

Q: Could either driver have done anything to avoid the accident?
A: Traveled by bus?

A Norwich Union customer collided with a cow. The questions and answers on the claim form were:
Q - What warning was given by you?
A - Horn
Q - What warning was given by the other party?
A - Moo

"On approach to the traffic lights the car in front suddenly broke."

"I didn't think the speed limit applied after midnight"

"The car in front hit the pedestrian, but he got up so I hit him again."

"I pulled away from the side of the road, glanced at my mother-in-law and headed over the embankment."

"A truck backed through my windshield into my wife's face"

"A pedestrian hit me and went under my car."

"In an attempt to kill a fly, I drove into a telephone pole."

"My car was legally parked as it backed into the other vehicle."

Submitted by Jim O’Donnell

One of our members, Evelyn, went to the Houston Conference on Pain a couple of months ago and set up a table with information on RSD from our group, the American RSDHope Group, as well as from the RSDSA. We appreciated her being there so much. I know she did it in spite of the tremendous pain she was in. Thanks Evelyn!

Here is her account.

Keith;

I was told over 400 people were there. We never stopped to count them though. I talked to people who had more paper hanging on their walls than I have wallpaper. Then again, we talked to LOTS of people just like all the rest of us. They have RSD and are scared to death.

Most of those I talked to, except the others working there, were newly diagnosed with RSD. The doctors stood and listened just like everybody else. They asked me questions and I answered to the best of my ability.

Karen (my sister) and Connie (my niece) talked to the non-RSD'ers to help them see the caregivers side of it. Lord help this one doctor. He asked me if there was anything I would really like to say to all the doctors. I told him yes!

"Please never laugh at us when we are trying to explain something. Give us a little more time when he sees us as we have a hard time remembering and explaining things. We have lists that we need answers to, and please don't say what we are feeling is impossible" Understand that with RSD anything and most everything is possible." Keith this doctor listened and was almost in tears. He has only been treating RSD for about 6 years. By Golly I think he heard me!

I shared all I knew. They had more information there than I could ever remember. It was painful to hug, but you know sometimes a hug will carry you longer than all the words in the world. I found myself hugging the newbie's and telling them to never give up hope. One day RSD would be a word of the past.

We passed out everyone’s literature as much as we could. Yet to tell you the truth, they were more interested in talking to live people. We all three came home tired but with a light heart. All in all it was the greatest thing I have ever done.

My doctor told me he would like to see me do more conferences. As long as i did not over do them. He said it has put the fight back in me.

Stopping police on the street to complain about something doesn't always pay off, anyway, but when a criminal on the lam does it, he's just begging for trouble.

Richard G. Gisher, 46, stopped a sheriff's cruiser in Belleville, Ill., in January, and yelled at an officer, demanding that he write a ticket for the guy who had just cut him off in traffic. After Gisher calmed down and left, the deputy noticed that Gisher was driving without headlights, and after stopping him, he further noticed that Gisher's license had been suspended for DUI. He was arrested.

I guess it has been a while since our last letter - rough winter all the way around. Hopefully we can get back on schedule :)

Looking out at green grass and bursting flowers, we can't help but think of a new beginning everywhere. You have all heard how well Keith is doing - and hopefully this procedure will be available at many places in the country very soon. It is amazing.

There are a few procedures being tested - and as my rheumatologist told me a couple of weeks ago - the next 4 or 5 years is going to bring a whole new way to treat pain. This has to be great news for anyone in chronic pain.

Our mailing list continues to grow. Please remember if you move to send RSDHope your new address, phone number and email address, if available. It is very frustrating to send something out and have it returned "forwarding time expired".

Quite often we get phone calls from an RSDer looking for the name of someone near them that they can talk with and maybe actually meet. Please remember when someone calls how very important that personal contact was to you early on.

Usually they just want to connect with someone near - sometimes they just need info - please be there for them - you are RSDHope - and they need to feel a part of us also.

We are already working on Conference 2004. We really needed a year - it will really make the next one worth waiting for.

Peace, Mom & Dad O

When things go wrong as they sometimes will;
When the road you're trudging seems all uphill;
When the funds are low, and the debts are high
And you want to smile, but have to sigh;
When care is pressing you down a bit-
Rest if you must, but do not quit.

Success is failure turned inside out;
The silver tint of the clouds of doubt;
And you can never tell how close you are
It may be near when it seems so far;
So stick to the fight when you're hardest hit-
It's when things go wrong that you must not quit.

Author Unknown

BACKGROUND: Chronic fatigue syndrome is a debilitating disorder that is characterized by extreme exhaustion. Researchers say more than 1 million Americans have the disorder, but 85 percent to 90 percent of them are undiagnosed. The reason for so many undocumented cases is CFS is difficult to detect. Symptoms are often similar to those of other illnesses and include fatigue, muscle pain, insomnia, impaired memory, and overall weakness. Previous studies show the cause of CFS is unknown and no specific diagnostic tests have been available.

Patients with CFS often cannot participate in the same activities they engaged in prior to having the disorder. Some can't even walk across a room because they are so tired. Bed rest does not seem to improve energy levels of patients with CFS, and physical and mental activity may worsen the condition. Another possible cause for so many unreported cases is many doctors misdiagnose CFS patients as having a psychological disorder. Barry Hurwitz, Ph.D., from the University of Miami's Behavioral Medicine Research Center, says patients often feel isolated. "Individuals are often stigmatized and told their illness isn't real," says Hurwitz. "People with chronic fatigue syndrome face an incredible burden just getting doctors to take their symptoms seriously."

NEW RESEARCH ON CFS: Hurwitz and colleagues from the University of Miami believe they've found a physical cause for CFS. They say the condition is linked to a decrease in red blood cells. "In chronic fatigue, about 60 to 70 percent of individuals we found have a deficit in red blood cell production, and it's not picked up by normal medical tests. It's not generally known in the medical community that there is this problem with red cell production," says Hurwitz. Red blood cells transport nutrients to cells, and an insufficient amount of them, can cause patients to feel fatigued.

A NEW TREATMENT OPTION: Researchers are now testing the drug Procrit on CFS participants who are between the ages of 18 and 55. Procrit is approved for treating cancer and kidney dialysis patients who are anemic. However, new research shows the drug also stimulates red blood cell volume in CFS patients by imitating the hormone erythropoietin that is normally released by the kidneys. Side effects of the drug include diarrhea, fever, and shortness of breath. Results of the ongoing study are not conclusive, but Hurwitz says Procrit is definitely helping some of the CFS participants. "Some people have shown remarkable improvement and have gone back to work, and in others, it's been less effective," he says. Researchers say future studies are needed to confirm the effectiveness of the drug on CFS patients.

FOR MORE INFORMATION, PLEASE CONTACT:
Alex Gonzalez
University of Miami
Behavioral Medicine Research Center
1201 NW 16th Street
Miami, FL 33125
(305) 575-7154

Nude burglar leaves behind wallet with ID

The case of the naked burglar was easily solved when the suspect left his pants at the scene of the crime. Inside a pocket: his Oregon driver's license.

"Thankfully it had his current address," Eugene police Sgt. Scott McKee said.

The man sneaked into an apartment on Payne Street last Saturday, stripped off his clothes and crept into a sleeping woman's bedroom, McKee said. The woman awoke, saw the man and screamed, prompting her boyfriend to jump out of bed and chase the nude intruder.

The man got away, but police had the evidence they needed. On Tuesday, they arrested him on a charge of first-degree burglary.

Hello All!

Recently we unveiled the brand new look for the American RSDHope Group’s website! There were some big change’s and some nifty additions. We changed the look completely to keep up with the times and the growing demands of the Medical Community and the Chronic Pain Patients and their loved ones that we reach.

Thanks to everyone who is helping spread the word on our website, especially all the listservs, Bulletin Boards, and email groups!

We are always adding new stuff and August will see the addition of several new sections and lots of additions to current sections, so don’t forget to bookmark us and check back often :)

Thanks to everyone who visited the Beta Test site and offered their suggestions and comments!

- A Site Search—You can now search our entire website for a specific word or topic.

- Refer-A-Friend—Feature that allows you to send any page on our site to a friend to share the information with them.

- New section on the latest Research Studies underway.

Some of the other changes we have made include a new look and feel to the home page, new colors, we changed code so the pages loads faster, and we made it easier to navigate. We still have some tweaking to do but we are never satisfied :)

We hope you like it!

Takes much less time to open and view. Easy to navigate and search. A multitude of useful info. Good job!

Much easier to navigate and pages load quicker. Great job.

I just like the way it looks, easier to read more professional. Looks GREAT!

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Much easier to navigate. More Doc's will look at the site as it is more business-like.

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It's seems like it is progressing with the times.

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I like the clean, crisp, look of the site. The scope and sequence of the info is clearly stated on the first page, as is the mission and purpose of the RSD Hope Group.

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Looks good!

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The new site is WONDERFUL! Just like you guys, ALWAYS working hard for us, to help us and improve our way of life with rsd. Thanks and God Bless, Carol

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I feel it is easier to get around.

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Well it downloaded really quickly, I like that, it saves a lot of time. I like the way thing's are right in front of you and you don't have to scroll and scroll, and scroll. It just feel's more comfortable :) Take care.

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Lay out makes it easy to navigate. Home page is bright and uncluttered.

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As a RSD/CRPS Sufferer; and being a Worker Comp. case, I found it very informative. This is truly a Godsend of knowledge as you are not afraid to mention God as a source for help and comfort. Well done. Keep up the awesome work! God bless you and all of RSDHope staff!

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I like your listing of new additions. Much easier to read, everything is right there on the page, no up and down scrolling.......great

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BUSINESS: Very organized ... Love the large link bars ... easy navigation.

PERSONAL: It encourages others to share their thoughts through art and "Site of the Month" nomination while it may seem more "business-like" and less personal, it is easier to navigate and all the info is right there. I think you are on the right track. I like it a lot. Love to u all (Mom and Dad O too)! :-) Raven

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I liked the setup and all and as usual Keith and family have the best RSD site on the net.

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It seems to have a quicker way to information which I like when you are limited to time of sitting. Thanks

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Although it is less personal, one can reach the personal parts. I really like the resources being right up front. VERY GOOD JOB!! Shari

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Easier to walk thru and learn about RSD. It has new columns as far as I see, because some of them I've never seen before and I LOVE the sight with the lapel pins … that’s awesome. I have RSD, now to do something against RSD and for the cure! Thanks for the opportunity to help. Michelle Lewis

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I believe it is a lot easier. Thank you!!!!!!!

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It is easier to read. I don't think it is any less personal, your heart and soul in helping us is still evident. Thank you all so much! Cindy, Reading, PA

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I like it ...pleasing to the eye ...easy to navigate thru

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I love the stories from other people. It enables us to learn from one another. Keith, I met you in Portland a couple years ago. I liked your site then and I love it now. Thanks, Liz

Three elderly ladies are excited about seeing their first Professional baseball game. They smuggle a bottle of Jack Daniel's into the ball park. The game is really exciting and they are enjoying themselves immensely, mixing the Jack Daniel's with soft drinks. Soon they realize that the bottle is almost gone and the game has a lot of innings to go. Based on the given information, what inning is it and how many players are on base?

Think!

Think some more!! You're gonna love it......

Answer: it's the bottom of the fifth and the bags are loaded........

Monday, May 12, 2003

Overview: A new study shows that opioid drugs taken orally could provide relief for some of the more than 2 million Americans suffering with chronic pain resulting from damage to the nervous system.

A new study shows that opioid drugs taken orally could provide relief for some of the more than 2 million Americans suffering with chronic pain resulting from damage to the nervous system.

"The main point people should take away from this study is that opioids work for neuropathic pain, but they don't work for everyone," says lead author Michael C. Rowbotham, M.D., director of the Pain Clinical Research Center at the University of California-San Francisco (UCSF). "The benefits must be weighed against the drawbacks for each patient."

The study was funded by the National Institute of Neurological Disorders and Stroke and appeared in the March 27, 2003, issue of the New England Journal
of Medicine.1

Whether to use opiates for chronic neuropathic pain has long been the subject of intense debate. Many physicians are reluctant to use these drugs because of the risks of addiction, tolerance, and side effects. Opiates, which derive from the poppy plant, include such powerful drugs as opium, heroin, morphine, and codeine.

Previous studies have shown opiates to be relatively ineffective for neuropathic pain in animals, and the animals typically develop tolerance over a short period of time, in that the drugs lose their ability to relieve pain.

Furthermore, few controlled clinical trials exist to guide the use of opiates in humans with chronic neuropathic pain, even though they have been taken for centuries to relieve pain.

Complicating the issue, neuropathic pain is difficult to manage because of its variety of causes. Pain may arise from injuries of the central nervous system, such as in stroke, multiple sclerosis, or spinal cord trauma.

It may also arise from focal injuries to the peripheral nervous system. The peripheral and central components of the pain pathways remain poorly understood.

To test the efficacy of the morphine-like opiate levorphanol, Dr. Rowbotham and his colleagues at UCSF randomly assigned adults with untreated chronic
neuropathic pain to high- (0.75 mg capsules) and low-dose (0.15 mg capsules) groups under double-blind conditions. Patients in both groups self-administered tapered numbers of capsules up to a maximum of 21 per day.

After an 8-week course of the drug, results showed that both high and low doses of the drug significantly reduced patients' pain. The patients' pain relief was maintained with stable doses of the drug, and most patients chose not to take the maximum number of pills.

These observations suggest that the patients did not develop tolerance and did not show signs of addiction, during the study.

Patients in both groups were asked to record the intensity of their pain, the degree of pain relief, and the number of capsules they took daily; the researchers also tested for psychological and cognitive function and blood levels of levorphanol. Patients taking the high-strength capsules averaged about 12 pills per day, whereas those on the low-strength capsules needed to take more, averaging 18 pills per day.

All patient groups reported pain relief from the treatment. The higher dose provided much greater pain relief than the lower dose - 36 percent reduction in pain compared to 21 percent, respectively.

However, more people in the high-dose group dropped out of the study, complaining of a range of side effects, including restlessness, depression, and behavior changes. A small number of patients in the high-dose group reported symptoms of increased
anger, irritability, confusion, or mood and personality changes.

This study is the first double-blind comparison of two dose levels of an opioid given to patients with the full range of neuropathic pain conditions, the researchers note.

To prove definitively that levorphanol relieves chronic neuropathic pain, a comparison group of patients taking a placebo,
or "sugar pills", would need to be part of the study. However, this approach is extremely difficult in pain studies, because patients in the placebo group would have to suffer pain throughout the trial.

Another reason the researchers opted not to use a placebo was that opiates have distinct side effects, making it virtually impossible to keep patients and clinicians from knowing who had taken which pills, Dr. Rowbotham said. "Levorphanol in this study was effective for a broad spectrum of pain conditions," says Dr. Rowbotham. Because of the ongoing controversy about opioid drugs, he's cautious in discussing the implications of his findings.

"Patients and physicians should consider opiates as one of the range of possible treatments for neuropathic pain, but opioid therapy is not for everyone," he said. Researchers still know little about the long-term effects of levorphanol.

More studies are needed to determine whether pain relief is sustained over a long period of time and whether tolerance or addiction become a problem over the long term.

The NINDS is a component of the National Institutes of Health in Bethesda, Maryland, part of the U.S. Department of Health and Human Services, and is the nation's primary supporter of biomedical research on the brain and nervous system. - By Tania Zeigler

As part of the RSDHope family your current address is very important to us and other RSD’ers in need. A correct address also saves us extra money on postage! Please take the time to keep yours up to date :)

Drop us a card if yours changes;

American RSDHope Group

PO Box 875

Harrison, ME 04040-0875

Email — RSDHope@roadrunner.com

You’re 18 and are going to pay for your own lawyer:

Cherokee County (Ga.) Sheriff’s Office deputies say Justin Goldstucker, 18, stopped by his parents’ house in Woodstock and told his mother and father, "This is the way it’s going to be: You’re going to write me a check for $50,000 and I’m not going to kill you."

Terrified because he had a gun, Cheryl Goldstucker was about to comply until Justin dropped the gun and she realized it was fake. But when he pulled a knife, she wrote the check. Justin has been charged with armed robbery and kidnapping, plus theft for stealing his mother’s wedding rings.

Debra and Tim Ferguson of California planned the cruise to Hawaii for years. They even brought along their four daughters, including their youngest, Kelley. But Kelley, 20, wanted to get back to her boyfriend so she left two terrorist threats for stewards to find in hopes the ship would turn around for home.

It didn’t. The captain dropped anchor until a squad of 100 federal and Hawaii state agents combed the ship — at a cost of $300,000. Kelley was quickly caught since she was the only one of 2,400 people on board who reported seeing "someone" plant the notes. She pleaded guilty to making false threats and faces 2-20 years in prison and up to $25,000 in fines. What do her parents think? They have refused to bail her out of jail. (Washington Post)

Pernicious anemia is a disease in which the red blood cells are abnormally formed, due to an inability to absorb vitamin B₁₂. True pernicious anemia refers specifically to a disorder of atrophied parietal cells leading to absent intrinsic factor, resulting in an inability to absorb B₁₂.

Vitamin B₁₂, or cobalamin, plays an important role in the development of red blood cells. It is found in significant quantities in liver, meats, milk and milk products, and legumes. During the course of the digestion of foods containing B₁₂, the B₁₂ becomes attached to a substance called intrinsic factor. Intrinsic factor is produced by parietal cells which line the stomach. The B₁₂-intrinsic factor complex then enters the intestine, where the vitamin is absorbed into the bloodstream. In fact, B₁₂ can only be absorbed when it is attached to intrinsic factor.

In pernicious anemia, the parietal cells stop producing intrinsic factor. The intestine is then completely unable to absorb B₁₂. So, the vitamin passes out of the body as waste. Although the body has significant amounts of stored B₁₂, this will eventually be used up. At this point, the symptoms of pernicious anemia will develop.

Pernicious anemia is most common among people from northern Europe and among African Americans. It is far less frequently seen among people from southern Europe and Asia. Pernicious anemia occurs in equal numbers in both men and women. Most patients with pernicious anemia are older, usually over 60. Occasionally, a child will have an inherited condition which results in defective intrinsic factor. Pernicious anemia seems to run in families, so that anyone with a relative diagnosed with the disease has a greater likelihood of developing it Causes and symptoms

Intrinsic factor is produced by specialized cells within the stomach called parietal cells. When these parietal cells shrink in size (atrophy), they produce less and less intrinsic factor. Eventually, the parietal cells stop functioning altogether. Other important products of parietal cells are also lessened, including stomach acid, and an enzyme involved in the digestion of proteins.

People with pernicious anemia seem to have a greater chance of having certain other conditions. These conditions include autoimmune disorders, particularly those affecting the thyroid, parathyroid, and adrenals. It is thought that the immune system, already out of control in these diseases, incorrectly becomes directed against the parietal cells. Ultimately, the parietal cells seem to be destroyed by the actions of the immune system.

As noted, true pernicious anemia refers specifically to a disorder of atrophied parietal cells leading to absent intrinsic factor, resulting in an inability to absorb B₁₂. However, there are other related conditions which result in decreased absorption of B₁₂. These conditions cause the same types of symptoms as true pernicious anemia.

Other conditions that interfere with either the production of intrinsic factor, or the body's use of B₁₂, include conditions that require surgical removal of the stomach, or poisonings with corrosive substances which destroy the lining of the stomach. Certain structural defects of the intestinal system can result in an overgrowth of normal bacteria. These bacteria then absorb B₁₂ themselves, for use in their own growth. Intestinal worms (especially one called fish tapeworm) may also use B₁₂, resulting in anemia. Various conditions that affect the first part of the intestine (the ileum), from which B₁₂ is absorbed, can also cause anemia due to B₁₂ deficiency. These ilium related disorders include tropical sprue, Whipple's disease, Crohn’s disease, tuberculosis, and the Zollinger-Ellison syndrome.

Symptoms of pernicious anemia and decreased B₁₂ affect three systems of the body: the system that is involved in the formation of blood cells (hematopoietic system); the gastrointestinal system; and the nervous system.

The hematopoietic system is harmed because B₁₂ is required for the proper formation of red blood cells. Without B₁₂, red blood cell production is greatly reduced. Those red blood cells that are produced are abnormally large and abnormal in shape. Because red blood cells are responsible for carrying oxygen around the body, decreased numbers (termed anemia) result in a number of symptoms, including fatigue, dizziness, ringing in the ears, pale or yellowish skin, fast heart rate, enlarged heart with an abnormal heart sound (murmur) evident on examination, and chest pain.

Symptoms that affect the gastrointestinal system include a sore and brightly red tongue, loss of appetite, weight loss, diarrhea, and abdominal cramping. The nervous system is severely affected when pernicious anemia goes untreated. Symptoms include numbness, tingling, or burning in the arms, legs, hands, and feet; muscle weakness; difficulty and loss of balance while walking; changes in reflexes; irritability, confusion, and depression.

Diagnosis of pernicious anemia is suggested when a blood test reveals abnormally large red blood cells. Many of these will also be abnormally shaped. The earliest, least mature forms of red blood cells (reticulocytes) will also be low in number. White blood cells and platelets may also be decreased in number. Measurements of the quantity of B₁₂ circulating in the bloodstream will be low.

Once these determinations are made, it will be important to diagnose the cause of the anemia. True pernicious anemia means that the parietal cells of the stomach are atrophied, resulting in decreased production of intrinsic factor. This diagnosis is made by the Schilling test. In this test, a patient is given radioactive B₁₂ under two different sets of conditions: once alone, and once attached to intrinsic factor.

Normally, large amounts of B₁₂ are absorbed through the intestine, then circulate through the blood, and enter the kidneys, where a certain amount of B₁₂ is then passed out in the urine. When a patient has pernicious anemia, the dose of B₁₂ given by itself will not be absorbed by the intestine, so it will not pass into the urine. Therefore, levels of B₁₂ in the urine will be low. When the B₁₂ is given along with intrinsic factor, the intestine is able to absorb the vitamin. Urine levels of B₁₂ will therefore be higher.

Treatment of pernicious anemia requires the administration of lifelong injections of B₁₂. Vitamin B₁₂ given by injection enters the bloodstream directly, and does not require intrinsic factor. At first, injections may need to be given several times a week, in order to build up adequate stores of the vitamin. After this, the injections can be given on a monthly basis. Other substances required for blood cell production may also need to be given, iron and vitamin C.

Prognosis is generally good for patients with pernicious anemia. Many of the symptoms improve within just a few days of beginning treatment, although some of the nervous system symptoms may take up to 18 months to improve. Occasionally, when diagnosis and treatment have been delayed for a long time, some of the nervous system symptoms may be permanent.

Because an increased risk of stomach cancer has been noted in patients with pernicious anemia, careful monitoring is necessary, even when all the symptoms of the original disorder have improved.

Information courtesy of the Thomson Corporation!

Cup to go:
Arthur Barron of Halifax, N.S. was driving with his wife while drinking coffee. The coffee triggered a coughing fit; he blacked out, lost control and crashed into a ditch. Marie Barron, who was injured in the crash, has won permission from the Nova Scotia Supreme Court to sue her husband, in part because he had a history of coughing after drinking coffee — even worse than the coughing fits that cigarettes triggered in him.

The court ruled that Marie was 10 percent liable for her own injuries, however, because she rode with him even though she knew of his coffee coughing problems. His insurance should cover any award a jury makes. "The case has not created any friction between Mr. and Mrs. Barron," her lawyer says. (Halifax Herald)

Virgin Islands Junket:
The state of Maryland faces its worst budget crisis in over a decade, with potential $65 million deficit this fiscal year. Things may be worse next year, leading the governor to seek $450 million in budget cuts. A group of state legislators is rushing to see if they can figure out a solution — in the Virgin Islands. At taxpayer expense. "I’m sure the reason they scheduled it in the Virgin Islands is because nobody would go to Pittsburgh," offered state Senate President Thomas Miller Jr. (yeah, that makes it okay then) (Washington Post)

Want to get rid of those annoying telemarketing calls? Do they always call at the wrong time? Now, thanks to a new law, you can have your number added to the "National Do-Not-Call Registry"!

Here is the link: http://www.donotcall.gov/

Click on the link to complete your request to register your phone number. Once you have registered, your phone number registration will be effective for 5 years. It will be illegal for most telemarketers to call you, and you will be able to file a complaint if a telemarketer does call you.

The website www.donotcall.gov provides information about filing a complaint. If they do call a number on this Registry they have to pay a very hefty fine.

Important: After you click on the link, print the web page and keep it for your records.

July 11 — "The questions began with the confession of an insider at one of the nation’s largest pharmaceutical firms. He says his former company deliberately distorted information about one of its drugs, possibly putting lives at risk, and costing patients and taxpayers millions of dollars. "Dateline" went looking for some answers and has the results of a year-long investigation into what may be one of the biggest medical deceptions in history".

Also located there, are other articles related to not only RSD but many types of Chronic Pain as well as information on medications, treatments, and the Medical Community in general. Always taking submissions!

WILKES-BARRE - A Luzerne County jury recently awarded a local woman and her husband $1.96 million for nerve injuries she suffered in a fall at a Dollar General store.
The Thursday-evening verdict, which could easily exceed $2 million after post-trial motions are decided, is the highest "slip-and-fall" verdict in Luzerne County that attorney Patrick Dougherty could recall.

Dougherty and other members of the Dougherty, Leventhal and Price law firm represented Joan and Jay Urbanski of Nanticoke in their 2001 lawsuit against Dollar General Corp., based in Tennessee.

Joan Urbanski, now 40, alleged she was shopping at the chain's Hanover Township store on the Sans Souci Parkway when she fell on "clear plastic packaging" she couldn't see, Dougherty said.

The suit went to trial last week before Luzerne County Court of Common Pleas Judge Peter Paul Olszewski Jr.

Dougherty said the defendants admitted negligence in the case. But the jury had to decide the amount of damages the Urbanskis suffered and if the corporation should pay punitive damages.

The jury awarded Joan Urbanski $862,000 for past and future medical expenses, pain and suffering, loss of future earnings and other counts; $1 million in punitive damages; and Jay Urbanski $100,000 for loss of companionship.

"We wanted to send a message back to Tennessee, that if you want to make money from Luzerne County residents, have safe stores," Dougherty said.

Dougherty said his client was at the store on Sept. 4, 2000, when she fell on the plastic. Urbanski was taken to a hospital emergency room. She had no broken bones but suffered reflex sympathetic dystrophy - a severe and painful nerve disorder that rendered the mother of six unable to work again. She must continuously undergo medical treatments.

Her family went to the store shortly after the fall and noticed the store aisles were a mess. One family member took pictures of the store, Dougherty said.

Urbanski, a nurse, was not working at the time of the incident because she was caring for her children, her attorney said.

The defense attorneys, Dougherty said, claimed Urbanski was lying about her injuries and that her doctors were wrong in assessing her injuries and rendering her unable to work.

But Urbanski said she's already had three years of treatment and expects many more sessions. She sees at least two local specialists and goes to two Philadelphia-area doctors several times per year.

And while the verdict might seem high, Urbanski said the jury's tally is reasonable for the amount of treatment she has to undergo.

"It is a serious injury and they came back with a serious verdict," she said. "It wasn't excessive."

Dougherty said a judge will still rule on whether the Urbanskis are entitled to delay damages, which are sought when a defendant refuses to accept an earlier settlement. The delay damages will likely push the total verdict to more than $2 million, Dougherty said.

Dollar General spokeswoman Andrea Turner did not say whether the company will appeal the verdict.

David Weiss, a Times Leader staff writer, may be reached at 831-7397.

QUOTE:

"We wanted to send a message back to Tennessee, that if you want to make money from Luzerne County residents, have safe stores." Patrick Dougherty , Plaintiff's attorney.

NATIONAL RSDS AWARENESS PIN! _____ $5.00 each This is a beautiful one inch oval pin. It is red, white, and gold. It will, we hope, become the National Symbol for RSD much the same way other diseases use ribbons. It is beautifully done. In small gold letters across the top it says ;

REFLEX SYMPATHETIC DYSTROPHY

and across the bottom it has the web site. On a white background in the center of the pin is a large red flame! We are asking $5.00 per pin which includes shipping within the United States. ALL PROFITS from the sale of these RSD Pins will go into the "Hope for Tomorrow" Research Fund. Groups can purchase them to help raise awareness while at the same time increasing funds for the "Hope for Tomorrow Research Fund".

LONG SLEEVE WHITE SHIRT _______ @ $20 each And 2X Large _____ @$22 each

NAME _______________________________________ PHONE (______)___________________

ADDRESS ____________________________________________________________________________

CITY ____________________________________ STATE ____ ZIP ______________________