Category: RSDS General Info

Written by RSDSA Intern Samantha Rose

How did you start working for the organization?
In the 1990s, I was working on the board of the National Organization for Rare Diseases (NORD). During this time, Dr. Robert J. Schwartzman convinced Roe Davis, Frank Davis, and Audrey Thomas to start the RSDSA Organization to support CRPS warriors. In search of a skilled and compassionate person to lead the organization, Mrs. Davis called Abbey Meyers, the founder of NORD, who recommended me for the position that I feel grateful to have had for the past twenty-five years. We then brought the organization to Milford, Connecticut.

How has the organization and its mission changed over the years?
When RSDSA first began, it had a newsletter, just as it does today. However, the newsletter today looks much different, and serves a very different purpose. Back then, it was filled with personal stories of “woah” about the struggles of CRPS. However, we have since changed the newsletter to make it a more informative and supportive outlet for CRPS patients, focusing on educating and giving hope to those with CRPS. “Hope” has become an integral part of our message and mission, one that we have– and will continue to– expand over the years.

Which aspect of the organization’s progress are you most proud of?
The courses that we have provided for doctors and nurses have been transformative in creating a medical world where more doctors are aware of, have interest in, and have the tools to help CRPS warriors. Additionally, the way that our organization has grown into the national, go-to organization for CRPS is incredible. We have built a patient-friendly community where everyone tries to help each other, regardless of physical distance. Planting seeds of hope has become much easier and more widespread with new social media outreach programs, much thanks to our social media manager, Alexis Johnson. In addition to increasing engagement on our virtual platforms, our Facebook Lives since the pandemic have educated and supported the RSDSA community. This is an improvement from before the pandemic, when we often had in-person conferences with 140-200 people attending. Now, we are able to have 1,400+ people from all around the country listen to guest speakers in their own homes. I am particularly proud of the Jenkins Patient System Program to memorialize Brad Jenkins, whose mom helped to start a fund for people to avoid eviction and get much-needed medications.

Which aspect of being executive director did you enjoy the most?
Often, new CRPS patients spend a quick fifteen minutes with their doctor discussing CRPS when they first are diagnosed, not receiving nearly the kind of education that they need in order to seek help and support. Therefore, being able to educate them, support them, and give them hope throughout their journey has been an incredibly rewarding experience. Whether it be through linking patients with financial support, service dogs, legal aid, medical professionals, or accommodations at work, I loved helping and supporting people. I specifically remember an instance where I was able to get a tank of propane filled for a warrior who could not afford it during a blizzard, and how the simple act created a huge difference in somebody’s life.

Which aspect of being executive director did you least enjoy?
While I loved being able to help people, the hardest moments of my day-to-day job were those when I was not able to provide the kind of help that somebody needed. Often, this came in the form of family members doubting their CRPS and abandoning them, diminishing the web of support and encouragement necessary throughout this journey. It also disappointed me when people did not find RSDSA until they were months and years into their diagnosis with no hope– we must try to reach people earlier in their illness to provide the kind of support they need.

What was your day-to-day life like as the executive director of RSDSA?
Before COVID, I often participated in many calls a day to help warriors when they sought more direction. This has changed, as most inquiries and responses now are sent through email. Every day on the job is a learning experience, as hearing people’s stories and needs allows me to explore what is lacking and how to improve our services. I also look for thought leaders and try to help curate treatment teams of doctors, physical therapists, occupational therapists, and aids for warriors to lead them in the correct direction.

How has the CRPS science changed over time?
Previously, scientists lumped all CRPS patients together for clinical trials, only differentiating subjects by Type I and Type II classifications. However, we no longer conceptualize CRPS as a homogeneous disease, largely due to a subset study conducted by Dr. Stephen Bruehl and Dr. Norman Harden. These doctors are the thought leaders of CRPS science, and have formed a collaborative team with which I have had great pleasure engaging. Through their work, we have been able to create five versions of clinical practice guidelines for CRPS. We also have used science to debunk the evidence-less theory that CRPS is solely psychological, validating the struggles of CRPS patients.

How can we expect the CRPS science to change in the future?
There currently is a study being conducted regarding neuroplasticity and treatments that are brain-based as opposed to targeting the afflicted limb. The Cleveland Clinic also recently received a multi-million dollar grant to evaluate a stem cell treatment for CRPS, with animal and human trials. We are also extremely hopeful about our CRPS subset study, which involves a consortium of three centers in Europe. My hope is that an international CRPS research consortium will come to fruition in the future; of course, this requires overcoming the long-standing challenge of not finding enough patients to participate in these studies.

What do you envision as the future direction of the organization?
For sixty years, ketamine has been known to be an effective treatment for chronic pain, but we have been barred by outrageous prices and legislative issues. This must change, hopefully through the work of the dedicated Jim Doulgeris with the RARE Act. Since 2016, there has been a war on people with pain because of misapplication of CDC and opiate guidelines, and we must fight back. This involves more research on CRPS and other rare diseases, which often is difficult because there is not adequate money to continually fund research grants. In the future, we might need to decide if the organization will mainly focus on research grants or support and education, or find other avenues for continued funding.

What are you most looking forward to during retirement?
I am excited to have more freedom and more time to explore the outdoors and go birdwatching and kayaking. In fact, my wife and I are going to see Christian Cooper, a famous birdwatcher and author, in Central Park. I am also an avid reader. I am excited to continue to give back to the community: my wife and I volunteer at a soup kitchen, and we look forward to other opportunities to help. Overall, I am looking forward to being present each day and treasuring every moment.

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FROM THE AUTHOR

Jim, the RSDSA community and my family are so grateful for everything you have achieved and how much support you have provided over the past twenty-five years. Your passion for helping others and creating a better life for people never fails to shine through, whether it be in phone calls, emails, Facebook Lives, and everything in between. We wish you the best of luck and happiness in your retirement.

Best,
Samantha

It is with deep sadness that we share the news of the passing of RSDSA board member, R. Steven Shisler, Esq. His unexpected departure has left us all in a state of profound sorrow and loss.

Steve Shisler’s loss will be felt keenly throughout the entire CRPS community. He was a fierce & compassionate defender of those who suffer from this debilitating syndrome. Unfortunately, he knew all-too-well the havoc CRPS can wreak on a body and a spirit, having dealt with its ravages himself as the result of a motorcycle accident many years ago.

While the CRPS community at large marks his passing, we at RSDSA are especially saddened. He served on our Board in several different capacities throughout his long tenure here.

He always provided ad hoc legal advice, and in recent years, functioned as the Board Secretary. Instead of a more traditional and formal roll call, Steve often began meetings with greeting each member by name as he recorded the Minutes.

More importantly, however, we could always rely on Steve to transform our divergent opinions into one cogent voice which enabled us to advocate successfully for our members. His was the voice of reason and the heart of understanding to which we all aspired. He will be sorely missed.

Learn more about Steven via the Wilde Funeral Home website.

In a recent article by PEOPLE Magazine, Maya Kowalski shares how her CRPS diagnosis was classified as Munchausen syndrome by proxy, a mental disorder in which a caretaker of a child either makes up fake symptoms or causes real symptoms to make it appear that the child is injured or ill.

RSDSA is working with other rare disease organizations to quantify how many rare disease families have been accused of medical child abuse.

If you want to share your story, please email us at [email protected].

Written by R. Steven Shisler, Esq. for the RSDSA blog.

Frequently, I receive telephone calls from potential clients who have, frankly, severely damaged their ongoing claims or lawsuits. When you pursue legal claims, whether they involve social security, workers’ compensation, medical malpractice, or other types of personal injury claims, remember that these common mistakes could lose your case.

1. Do it Yourself
Representing yourself is definitely not advisable because you don’t have the knowledge, skills or the experience of a practicing attorney who specializes in medical claims. This is especially true for social security and workers’ compensation matters. Many claimants think they will receive benefits by simply completing application forms. To be successful, retain counsel before you begin the application process.

2. Delay or Fail to Take Action
I had a client who sought representation for a workers’ compensation claim. Although he had been receiving workers’ compensation for a job- related injury that had occurred 11 years earlier, His employer’s insurance carrier wanted to revoke the client’s benefits. Unfortunately, when the accident happened, the client was afraid he would lose his job if he sued his employer.

Unfortunately, he discovered, too late, that his best opportunity for compensation would have been a products liability claim against the manufacturer of the defective machine that had caused his injury.

The products liability claim would have been worth hundreds of thousands of dollars. His workers’ compensation claim amounted to a relatively small sum.

3. Retain the Wrong Attorney
The best way to find an attorney is to ask people you know. Good attorneys get most of their clients by word of mouth, as opposed to those who advertise on television or in the Yellow Pages. A general practitioner probably lacks the knowledge to handle cases involving CRPS that involve highly specialized areas of the law.

Hire an attorney who comes highly recommended from a source you trust, and then research his (or her) background. Do not be afraid to ask the attorney about his level of experience with your type of case. Ask for names and telephone numbers of references. Find out his success rate. Look him up in the Martindale Hubbel law directory or other directories of attorneys.

Trust your instincts; first impressions are critical. If the attorney does not impress you at the first meeting, what kind of impression do you think he is going to make on a judge or jury? Additionally, never be reluctant to fire your attorney if you lose confidence in him, but find new counsel first so there is no gap in representation.

4. Hire and Fire Multiple Counsel
Most attorneys will not be concerned if you want to fire your current counsel and hire a new one, unless you have gone through three or four attorneys. This shows the attorney that you are most likely the problem.

5. Be Cheap
You get what you pay for. If the case needs specialized knowledge, the fee will be higher. For an attorney to handle an CRPS case, he must have knowledge of the particular area of the law involved, knowledge of medicine generally, and knowledge of CRPS in particular. Medical malpractice cases and product liability cases are particularly complex and involve a great deal of work as well as specialized knowledge. Ask what the customary fee is for your type of case.

In Philadelphia, the standard fee for a medical malpractice, products liability, or personal injury case is a 40% contingent fee. If you win, the attorney gets 40% of the gross recovery. If you lose, you pay nothing. In Pennsylvania, the maximum fee for a workers’ compensation case is 20% and or a social security disability case, 25% of any past due benefits with a maximum fee of $4,000.

6. Treat with Multiple Medical Providers
One of the biggest problems with CRPS cases is the damage that is done when the client jumps from doctor to doctor in that pain driven, panic-stricken search for the miraculous cure. If you have CRPS, you have a horrible condition that is likely to be permanent. Your goal should be to reduce your pain and improve the quality of your life .Going from doctor to doctor creates a number of problems. The defense can argue that you really do not have a case, but simply changed doctors until you found one who would report what you wanted. You might be portrayed, for example, as being emotionally unbalanced. To insurance claims representatives companies, voluminous records from many medical providers raises a flag.

Multiple medical providers may result in duplications of treatment that negatively influence juries and judges, and increase your costs.

Medical experts charge substantial sums to testify and reimbursement of these expenses is deducted from your recovery.

If your insurance coverage has been exhausted or if there is an insurance subrogation lien, you may have to pay the doctors.

7. Fail to Communicate with Your Doctor
Tell the doctor when you have new symptoms and about your limitations. If you testify regarding certain complaints or limitations and these are not addressed in the medical records, your testimony lacks support. Do not be macho and omit complaints or symptoms in your discussions with your doctor.

8. Be a Motor Mouth
One of the most damaging things that clients do is talking too much to the wrong people. While it is important to communicate clearly to your doctors, other medical providers, and lawyers, talking too much to others is dangerous. Be alert all the time, and remember that all those “nice” people you talk to might be recording everything for their records.

9. Thinking About Your Actions on a “Good” Day
CRPS pain waxes and wanes. There are bad days, and then there are good days when the pain, although severe, is more bearable. The private investigator who may have you under surveillance will not document anything that supports your claim. Be especially careful on the good days, enjoy yourself, but be aware that if you are outside, you may be under surveillance. That videotape will be shown to a jury after you testify about your difficulty walking, reaching, using your injured hand, and so on.

10. Disregard Your Attorney’s Instructions
If you have chosen the right attorney, he has a great deal of knowledge and experience. If you do not trust his opinions and his instructions, then hire someone else.

If you really want to lose your case, disregard your attorney’s instructions and speak with insurance company representatives when they telephone you. Later you can tell your attorney that you only answered a few questions, and they were not damaging, in your opinion. That way, your attorney will be surprised when he receives a copy of your damaging statement. Better yet, communicate with the representative of the insurance company but never tell your lawyer about it.

11. Lie
A great way to lose your case is to lie. Lie or exaggerate to your doctor about your symptoms and complaints and your responses during his examination. That way the medical records will be contradictory and easy for the defense to challenge. Lying during the “independent” or defense medical examination is also a great way to lose your case. Then the defense doctor can testify that none of your symptoms made sense, that they did not follow neurological patterns, that you are exaggerating, or can otherwise damage your credibility.

You can destroy your case by lying to your attorney. A lie is especially effective if you completely change your story at trial from what you have previously represented in your pleadings, deposition, and medical records. There is never a reason to lie.

12. Don’t Do Your Homework
You win a case because you have the best lawyer, you are well prepared, you testify appropriately, and you have the best evidence. The case is always won in preparation, long before trial. Keep appointments with your doctors to provide evidence of consistent medical treatment without unusual gaps in treatment. Listen to your attorney’s instructions during preparation for defense medical examinations, depositions and hearings or trials. Do your “homework,” such as reviewing your medical treatment and other subjects.

Conclusion

Hopefully, by showing you how to lose your case, you will think about how you can win because the weakest part of the case is often the client. Be aware of your role and the impact of your choices and actions on the outcome of your case. Think, be selective, communicate about your injuries and your case  th only the appropriate people (your lawyer and your doctor). Be aware of the things you say and do in public. Take an active role in your case, follow instructions, and work closely with your attorney for that successful outcome.

R. Steven Shisler, Esquire is an attorney whose practiceconcentrates in plaintiffs’ medical malpractice, products liability and other personal injury matters involving nerve injuries and reflex sympathetic dystrophy. He is an RSD survivor.