Yearly Archives: 1998

I recently spoke with a patient who stated that his marriage was under a great deal of strain – which is highly understandable as the significant others of patients are the caregivers and are often in the line of fire, so to speak.

This was not the first time a wife or husband had confided this to me. Helplessness can cause patients and/or their caregivers great despair – to which wanting to run away is an understandable reaction.

Patients experience pain, embarrassment, and uncertainty when afflicted with P/P or other rare diseases.

The caregivers can empathize, the caregivers cannot truly feel what the patients are experiencing.

Everyone who is a caregiver tries his or her best to be supportive. Every patient who is undergoing this challenge is bound to be depressed and scared at times. Every family member may feel helpless most of the time.

This is the time to reach out and ask for guidance. Finding support groups is easier these days due to social media. Pemphigus Vulgaris is only one of 7,000 rare diseases that exist today and there are sources of information for each one of them. Search the Internet and contact local support groups. Check out the link given here for caregivers (It’s one of the very best!).

http://www.caregiveraction.org/

Rare Disease Day (RDD) is a unique global advocacy effort to bring recognition of rare diseases as an international health challenge.

On March 2, 2015, rare disease patients, caregivers and advocates, rare disease organization, legislators, and industry representatives gathered at the California State Capitol. Will Zrnchik, IPPF CEO, welcomed the crowd and introduced Peter Saltonstall, President and CEO of the National Organization for Rare Disorders. Peter said, “NORD has been working … to find a therapy, make sure the pathways are clear, and to make sure that the incentives are there for industry to want to develop drugs for small populations.” California Assembly Member Katcho Achadjian (D-36) co-sponsored CA House Resolution 6 recognizing February 28, 2015 as Rare Disease Day in California.

_MG_9125                  _MG_9296

Inside the Capitol, Andrea Vergne, rare disease caregiver and advocate, told her grandson’s story living with a rare disease. Gary Sherwood, Communication Directors at the National Alopecia Areata Foundation, inspired attendees to become self-advocates and work with their elected officials. Adding to the advocacy theme, Eve Bukowski, California Healthcare Institute, echoed the need for patients to self-advocate. A special guest, California State Senator Dr. Richard Pan discussed the importance of rare disease advocacy and research.

Meanwhile, Marc Yale, IPPF Senior Peer Health Coach, and Kate Frantz, Awareness Program Manager, celebrated RDD events in Washington, DC. Marc attended NORD’s special preview of the new documentary “Banner on the Moon.” Patients, caregivers, advocacy groups and patient organizations saw Cindy Abbott’s inspiring. Cindy carries a NORD banner with her on several adventures to spread rare disease awareness. These included challenging herself to climb Mount Everest and participating in the 1,000-mile Alaskan Iditarod. Cindy’s perseverance and commitment to live life to the fullest were very inspiring.

Kate and Marc attended the American Medical Student Association’s Annual Convention. Two P/P patients, Liz Starrels and Mimi Levich, shared their P/P stories. Many students had never heard of P/P, or only briefly remembered it from their textbooks. This was a wonderful opportunity to spread awareness and encourage medical students to “Put P/P on their Radar!”

RDD 2                           RDD

Marc represented the P/P community at the Rare Disease Legislative Advocates (RDLA) conference.  There was an overview of the 21st Century Cures Initiative (http://energycommerce.house.gov/cures), which many believe is the rare disease community’s greatest hope for new and emerging treatments.

Marc also met with several Congressional Members and legislative health experts encouraging their support of the Orphan Product Extensions Now Accelerating Cures and Treatment Act of 2015, H.R. 971. This legislation would re-purpose existing drugs for rare diseases allowing patients greater access to vital treatments.

Marc RDD                                        Marc RDD 2

Marc attended a symposium celebrating rare diseases research efforts across NIH, the Federal Government and the entire advocacy community.

There are over 7,000 rare diseases. 1 in 10 Americans are affected and 95% of these diseases have no approved treatment. Rare Disease Week and Rare Disease Day is an opportunity for the Pemphigus and Pemphigoid community to be heard by advocating for yourself and others.

If you have questions about current legislation or would like information on how you can become involved, please contact marc@pemphigus.org.

Results So Far

I had a follow-up appointment with Dr. Williams on July 17, 2014, one month after my first infusion and two weeks after the second. She looked at me and I swear her jaw dropped. She was amazed by how well I had responded. That was a fun appointment!

Jack Sherman 7

She had consulted Dr. Anhalt shortly before my treatment. Dr. Anhalt suggested going off of azathioprine a month after my second infusion (August 1), and to start a slow prednisone taper. I asked Dr. Williams if I should stop taking azathioprine now, two weeks before we were planning. We agreed I should stop taking it. One drug down!

Since then I haven’t taken azathioprine. Better yet, I’ve been on a continual prednisone taper. I started on 25 milligrams every other day. A week later, on July 23, 2014 (three weeks after my second infusion) I took these pictures. I was completely lesion free! I was ecstatic to say the least. This far exceeded my wildest dreams!

In January 2014 I am down to 2 milligrams of prednisone, every other day! This is the lowest dosage of prednisone I have ever been on. The best news is my skin is completely void of lesions. Sure I’ve had one or two minor ones, but nothing that doesn’t clear up quickly. Pretty amazing considering where I started.

I’m not claiming remission — yet! While it’s easy to be confident about my recovery, I prefer to say I’m very optimistic about my future living with pemphigus. What I have learned over the years about this disease is things can change pretty quickly. I could end up in total remission, or I could end up needing another round of Rituximab. Either way, I believe I will be better off than had I not opted for rituximab. For that I’m very grateful!

 Continued Support and Education

Each individual is just that, an individual. These diseases aren’t like more common diseases, like Type II Diabetes. If you go to 10 doctors after a diabetes diagnoses you will probably hear the same thing and expect the same results. With pemphigus and pemphigoid being rare, ultra orphan autoimmune diseases, your results and advice will likely vary.

Even though I’m a Peer Health Coach, Marc Yale has continued to be my coach. I can’t thank him enough for his time, knowledge and support he’s given me over the years. My goal is to help patients like Marc has helped me, and share this knowledge with them each and every day. Reach out to the IPPF and use its wealth of knowledge and patient resources. If you can attend the IPPF Patient Conference, I encourage you – I implore you – to go. The information and fellowship really does make a difference!

In the end, my biggest piece of advice to you is to be proactive in you care and treatment. Work with your physicians and create a team committed to your success. Share what you learn from your coach, attending a conference, or from a conference call with your doctor. Ask them to contact the IPPF who will connect them with a P/P expert. Whatever you do, it’s your health and quality of life at stake, so make informed, educated decisions. I did and couldn’t be happier!

Good luck, and good health to you all!

Part One
Part Two

Feb. 26, 2015 – SACRAMENTO, Calif. — Join rare disease patients, caregivers and other health care advocates in California on March 2, 2015 to raise important awareness for rare diseases as part of Rare Disease Day®.

During the event, patients and advocates will come together to articulate with one voice the shared message that millions of people around the world are suffering and need our help. Our patients need earlier diagnosis; safe, effective treatments; and assured access to medical care and other services.

Many important decisions related to rare diseases are made at the state level, including newborn screening; support services to help families cope with complex medical needs; an environment that promotes innovative medical research and product development; and insurance practices that assure patient access to medically-necessary therapies. The implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the health care needs of Americans are addressed.

The event will be held on the North Steps of the Sacramento State Capitol at 10:00am. Speakers include Will Zrnchik, CEO, International Pemphigus & Pemphigoid Foundation, Peter Saltonstall, President and CEO, National Orginzation for Rare Disorders, and 2015 Rare Disease Day Resolution co-sponsor Assemblymember Katcho Achadjian. Immediately afterwards, people are encouraged to join speakers, patient advocacy organizations, and others to hear patient stories inside the Capitol, Conference Room #126.

The event is organized by patient advocates who have joined with the National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases, and national sponsor of Rare Disease Day in the U.S., to educate and inform the public, elected officials, legislative staff and the media.

According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 Americans. One in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments. Many diseases are not being studied by medical researchers. Often, research gets funded by the families and friends of patients or by patient organizations.

Rare Disease Day is an annual awareness day celebrated around the world dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients. Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face. It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations.

For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us. For information about global activities, visit www.rarediseaseday.org). To search for information about rare diseases, visit NORD’s website, www.rarediseases.org.

Time for the Infusion

As the treatment drew near, I had a lot of questions for Dr. Williams. She felt an oncologist was better equipped to answer them, so she scheduled a consult with one. That was a great move. The oncologist answered all my questions. He said prescribing and administering Rituxamab is an everyday occurrence for the infusion room. He said they give this treatment to leukemia and lymphoma patients who are in very poor health. Since I was in relatively good health, his concerns of complications for me were minimal. That was reassuring.

I had to do a lot of lab tests, which is common for intravenous treatments affecting the immune system. I was tested for several types of hepatitis, HIV, TB, and other infectious ailments. You can see from my “before” picture how bad my skin was.

I was treated using the Rheumatoid Arthritis Protocol (1,000 mg intravenously on days 1 and 15). My first dose was administered on June 17, 2014 and lasted 6 hours; the second on July 1, 2014, lasted 4 hours. I was relieved that other than a little jitteriness caused by a steroid drip, I had absolutely no side effects or reactions. It literally felt like I was getting a routine saline solution infusion.

Jack Sherman 4 Jack Sherman 3

When I went in for my second infusion, there was no change in my disease activity. I didn’t expect to see any changes for at least a month. To my surprise, as you can see by this photograph comparison, I was seeing signs of improvement a week after my second infusion! I was still taking 250 milligrams of azathioprine and 25 milligrams of prednisone every other day.

Jack Sherman 6 Jack Sherman 5

Stay tuned for next week’s conclusion of Jack Sherman’s Road to Rituximab Story…

Part One
Part Three

This article was originally was posted at http://www.medscape.com/viewarticle/840206

The National Organization for Rare Disorders
The Importance of Rare Disease Education
Sophia A. Walker

February 25, 2015

Recently a wise professor told my class that we medical professionals are some of the most powerful people in the world. Indeed, we have the ability to meet people at their most vulnerable, sometimes on the very worst day of their lives, and help them. “This profession,” he told us, “is such a privilege that we must never miss the opportunity to have at least done some good for every patient.” Over the past several weeks, as I have planned rare disease awareness events and begun preparing to enter the clinical years of my medical education, I find myself considering these words more frequently. However, at the end of the day, I wonder how powerful we are, really…

My interest in rare diseases originated during my senior year of high school, when I first started volunteering at the National Organization for Rare Disorders, Inc. (NORD). I was overwhelmed to discover the many obstacles experienced by patients who have rare diseases. On a technical level, any disease that affects fewer than 200,000 Americans is considered rare. Of the more than 7000 rare diseases, only approximately 350 have treatments that are approved by the US Food and Drug Administration (FDA). I found that individuals with these diseases, almost two thirds of whom are children, show great courage and perseverance in the face of significant discouragement. Although I had always wanted to be a doctor, it was not until I witnessed such unrelenting determination to overcome barriers in healthcare that I discovered my own enthusiasm for medicine.

All physicians strive to provide attentive medical care with the utmost compassion and empathy; however, as medical professionals, we must also be our patients’ most vocal advocates. Although I was not yet a physician, I still wanted to contribute to this effort. I wanted to provide a forum for the nearly 30 million Americans with rare diseases whose voices often go unheard in the medical community, and I wanted to share this passion with my peers. Every year, my fellow students and I host a Rare Diseases Awareness Event. Patients, students, clinicians, and researchers come together to share their experiences and insights regarding rare diseases. We strive to shed light on the lives of these individuals by allowing them to share their own stories, sometimes for the very first time.

Although many students may assume that we do not need to know as much about rare diseases because we are unlikely to encounter them in our practice, this is simply not the case. In fact, every one of us preparing for medical careers will see patients with rare diseases, and the extent to which we prepare ourselves for this reality will determine the impact we can have on these patients’ lives. Patients who have a rare disease face difficulty in every step of medical care, including diagnosis, treatment, and preserving quality of life. Sometimes, patients go years without receiving the correct diagnosis for their condition. Once they finally have an answer, often no treatment is available for their condition. As future physicians, we must aim to improve these prospects; the first step in doing so involves developing a keen understanding of this patient population.

The opportunities for medical students to learn about rare diseases are vast. Gaining a basic understanding of how the experience of having a rare disease is different from having a more common disease is equally essential. The National Institutes of Health (NIH) has great information related to rare diseases on its website, and the NORD website provides overviews and links to more than 200 patient organizations that provide excellent information about specific rare diseases. Students can also apply for a free NORD student membership by writing to bhollister@rarediseases.org. Once you register, you receive a monthly eNews and quarterly newsletter specifically designed for students planning healthcare careers. If you’re attending the American Medical Student Association annual convention in Washington, DC, on February 27 and 28, come to the NORD booth in the exhibit hall where patients with rare diseases will be sharing their stories.

With each speaker I listen to at a rare diseases event, with each new person I meet, I am filled once again with immense pride that our efforts, if even in a small way, have done some good. Unlike many people who are involved in advocacy efforts in this area, when I began this work, I did not have a personal connection to rare diseases. However, after years of getting to know people who have experienced these struggles, I can say that I now have several. In fact, it is the memory of the individuals I have met and the satisfaction in having contributed to raising awareness that has guided my interests, served as an influence in many decisions, and ultimately has been the driving motivation in achieving my aspirations. With every step I take moving forward in my career, rare diseases comes along with me and will continue to do so.

My passion for rare diseases advocacy has become perhaps the foremost aspect that defines me and has made me who I am. It has given me direction, has made me a leader, and continually prepares me to become one of those physicians who will do some good. A couple of years ago, one of my undergraduate professors asked me, “Are you that rare diseases girl?” He went on to say that a student who had been inspired to research rare diseases after attending my event had approached him with an interest in working in his lab. This is the reason why I raise awareness for rare diseases. If just one more person every year becomes inspired, that may eventually make all the difference in the world. It turns out that, in the end, we are all powerful together. After all, according to the NORD motto: “Alone we are rare. Together we are strong.”®

The Southern California Pemphigus & Pemphigoid Support Group Meeting

was held on Saturday, October 25, 2015 at the Santa Monica Public Library

in the Martin Luther King, Jr. auditorium. Dr. Jennifer Haley, Dermatologist,

Kaiser Permente and Dr. Vanessa Holland, Dermatologist, University

of California, Los Angeles answered questions from patients and loved ones

for two hours. There were 31 people in attendance. Patients asked a lot of

important questions regarding treatments, nutrition, vaccinations, and

on-going research. Also, many engaging discussions with the doctors and

patients occurred. Hearing other patient experiences in dealing with this rare

disease was healing. Afterwards, a lively social gathering was held outside

on the patio with refreshments provided by Biofusion, who sponsored the

meeting. Many came away with new friendships and an enthusiasm for next

year’s meeting.

If you are interested in hosting a support group meeting in your local area

please contact Noelle Madsen at noelle@pemphigus.org.

A group of PEM Friends enjoyed lunch together in London, November

2015. We met to share their experiences and advice. We were particularly

pleased to be joined by Dr. Jane Setterfield, reader and honorary consultant

in dermatology in relation to oral disease at Guys and St Thomas’

Hospital. Dr. Setterfield’s enormous experience and understanding of bullous

disease and advice on its treatment, was well received. Everyone had

a chance to talk with her and get a lot of questions and concerns answered.

It’s always good to meet others who have faced similar challenges and

this was a great opportunity to do so in a relaxed, informal environment.

On October 18, 2014, the Houston Support Group

held its FOURTH meeting of the year! Patients gathered

at the Bayland Park Community Center and

discussed their current disease states, provided

feedback and support, and overall had a very nice

discussion amongst peers.

The Houston support group meets every 3 months

at the Bayland Park Community Center. If you have

questions about the support group leader, or want

some delicious pralines, contact Mary Lee Jackson at

marylee@pemphigus.org.

left: Mei Ling

Moore, Diane,

and Ron

below: Noelle

Madsen, Lynn,

Dr. Holland,

Dr. Haley, Mei

Ling.

far left: Isobel Davies, Dr. Setterfield, and

the PEM Friends gather in London, UK.

DO YOU HAVE A

GROUP?

F

LET US KNOW! It doesn’t have to be formal

to be a group! All you need is another person,

a place to sit, and time to talk. The important

thing is to be able to share your experiences

and get the support you need.

If you want to find others in your area, contact

Noelle Madsen at noelle@pemphigus.org.

 

Veltuzumab is an anti-CD20 antibody administered by subcutaneous injection. In a recent study, it was shown to be safe and effective. Results showed one patient to be in complete remission of disease and off therapy. No serious or adverse events occurred during the 35 months of follow-up. Orphan drug status is granted by the FDA to a drug or biological product to treat a rare disease or condition upon request of a sponsor. Orphan drug designation qualifies the company for various development incentives, including tax credits for qualified clinical testing, a waiver from FDA’s application, and a seven- year period of marketing exclusivity in the United States for veltuzumab, if it is approved by FDA for the treatment of patients with pemphigus. The granting of an orphan designation request does not alter the regulatory requirements and process for obtaining marketing approval. Safety and effectiveness of a drug must be established through adequate and well-controlled studies before a drug becomes FDA approved.

 

I wanted to know what this means for the pemphigus & pemphigoid community, so I spoke to one of the authors on this study, Dr. Aimee S. Payne, M.D., Ph.D. Dr. Payne is an Albert M. Kligman Assistant Professor of Dermatology at the University of Pennsylvania. I asked Dr. Payne what does orphan drug status for veltuzumab mean for pemphigus vulgaris patient right now. She said, “Although there is no immediate effect on pemphigus therapy right now, the orphan drug designation is an important first step toward FDA approval. It helps to encourage the development of treatments for rare diseases such as pemphigus.” More specifically, I asked if she could elaborate on what this means for pemphigus vulgaris patients in the future. Dr. Payne replied, “We are currently working with the company to design a clinical trial of subcutaneous veltuzumab in pemphigus.” An advantage of subcutaneous dosing is it is more convenient, and requires a shorter post-injection observation time (30-60 minutes) opposed to intravenous dosing that can take several hours to complete. While not immediate, Dr. Payne is hopeful veltuzumab testing could extend to other pemphigus and pemphigoid patients (i.e. PF, BP, MMP, OCP, PNP, etc.)saying, “Veltuzumab may eventually be tested in patients with other autoimmune blistering diseases in the future.” To read the study abstract visit http://pemphig of a discussion during our 2014 Patient Conference in Chicago. There, a panel of expert patients answered questions from the audience on different aspects of P/P. The discussion was incredibly informative. We decided to return to it for our first call in May. June’s call focused on rituximab (Rituxan®/MabThera®) and featured special guest panelist, dermatologist, and a major influencer behind the founding of the IPPF, Dr. Grant Anhalt. Dr. Anhalt himmense experience in treating P/P patients with rituximab, and was able to provide a lot of insight on the treatment. MAB member Dr. Neil Korman, also a dermatologist, was featured in July’s call, which was a general Q&A session. Dr. Korman has been treating P/P for years and is a good friend of the IPPF. He was able to provide care tips and advice to those able to ask questions. A huge topic we get questions on regularly is oral pemphigus and pemphigoid. For example,

 

“What kind of topicals are used for mouth lesions?” “Can I still brush my teeth?” “Can I have dental implants?” Our August call focused on oral care and featured professor and periodontist, Dr. Terry Rees. September’s call focused on another hot topic here at the IPPF: IVIG. MAB member Dr. Sergei Grando is a dermatologist practicing in Irvine, CA, who has massive experience in treating P/P patients with this infusion therapy. In October we did another patient panel of expert to answer questions. Peer Health Coach Marc Yale and IPPF founder Janet Segall joined us on the call. Dr. Susan Cohen Byrne, a PV patient and psychotherapist out of Davis, CA, was on our November call discussing the mind/body connection. She focused on managing mental health while combating a rare disease. If you were unable to participate in the previous calls and would like to listen to the call recordings or read through the call transcripts, you can go to pemphigus.org/ peer-support/town-hall-series/. If you want to learn more about the series, or have any questions, please contact Noelle Madsen at noelle@pemphigus.org. Noelle Madsen is the IPPF Patient Services Coordinator and lives in Sacramento, CA. She is dedicated to providingsupport and education to those affected by P/P. She is a new contributor to the Quarterly and can be reached at noelle@ pemphigus.org Q: What is one of your biggest accomplishments?

A: We were successful in passing legislation which directed the US Food and Drug Administration (FDA) to increase access to accelerated approval pathways for rare diseases. [Author’s note: Accelerated approval can bring downthe cost and time of the drug development process allowing for less-stringent criteria (also known as a surrogate endpoint) when determining whether a drug has passed a clinical trial.]

Q: What are the foundation’s future aspirations?

: A primary aspiration is to create a market incentive to repurpose major market drugs for rare diseases. Companies currently do not have an incentive to develop their current drugs in major diseases for rare diseases. Companies can be incented with market exclusit.

Q: What are the biggest opportunities and challenges for rare disease community?

A: Thirty million Americans are affected with rare diseases, but the advocacy community is less than one million strong. There is potential to grow the advocacy community. FDA and National Institutes of Health (NIH) budget cuts are significant challenges.

Q: How can organizations and individuals get involved with your foundation?

A: We recently launched the Community Congress, which brings together industry and patient organizations. Additionally, organizations can endorse the CureTheProcess campaign (www.curetheprocess. org). We rely on our patient organization partners to reach out to their members to contact congress. Individuals can also get involved in the Rare Disease Legislative Advocates program (e.g., patients and parents). Badri Rengarajan, MD, is President of the IPPF Board of Directors and lives in northern California. .

to let people know as soon as

possible, and maybe, by chance,

someone contacts us saying that

they know somebody who needs

help.”

This goes to show no volunteering

act is too small. We all have it

in us to spread awareness and can

start by looking for opportunities

in our own communities.

ADA Presentation

On October 9, 2014, Dr. Vidya

Sankar presented at the American

Dental Association’s (ADA)

Annual Meeting in San Antonio,

Texas. Her presentation, “The Dental

Detective: Investigating Autoimmunity,”

addressed the common

symptoms and referral patterns

for several different autoimmune

diseases, including PV and MMP.

This served as an excellent way to

provide continuing education on

these illnesses to the entire dental

community.

“The oral health care professional

will commonly encounter

patients with an array of oral and

systemic health needs,” Dr. Sankar

said. “The ADA offered us a

platform to review some of these

lesser known conditions in order

to identify patients with potentially

undiagnosed needs and act as

a conduit to aid in diagnosis and

management. Additionally, linking

up the dental professionals

with professional societies such

as the IPPF will help to increase

awareness and access to care and

potentially increase our patients’

quality of life.”

The IPPF thanks Carlos, Dell,

and Dr. Sankar for their collaboration

on this project and their devotion

to raising awareness.

Together we can raise awareness

and promote early diagnosis

of PV and MMP. We all have ways

we can contribute. These are just

three of the many more tales of

awareness there are to share.

What’s yours? The IPPF encourages

our Community to get

involved with the Awareness

Campaign. If you are interested in

learning more about the campaign

or getting involved, please contact

Awareness@pemphigus.org.

Kate E. Frantz, MPH, CTTS, is

the Awareness Program Manager

at the IPPF living in Dixon,

CA. She is a contributor to

the Quarterly newsletter in her

“Awareness and You” column.

Kate can be reached at awareness@

pemphigus.org.

. . .continued from AWARENESS, page 6

Vidya Sankar, DMD, MHS, University of

Texas Health Science Center, San Antonio

generous. It has been overwhelming and we have

done really well so far. The IPPF has helped us, too, by

providing promotional material that we handed out.

We also had T-shirts and a banner made, which have

definitely helped raise awareness of PV. Please check

out the IPPF Facebook page to see photographs of

the event.

Thanks entirely to the funds we raised, I received

my first rituximab infusion two weeks ago, and it went

well. I am due for my second infusion next week, and

while I know I have a long wait, I am feeling very positive

about the outcome.

I just hope and pray it will work for me. I have been

advised that it normally takes at least three months

to determine whether or not rituximab is effective,

and I understand it is likely I will need further infusions.

Over the next few weeks, I will hopefully be

reducing the steroids and immunosuppressents.

As you can imagine, trying to cope with this disease

over a number of years has taken its toll. I have gone

from being a very fit and healthy man to being overweight

with a painful, incurable disease. This whole

period has been a depressing and difficult time for

me and my whole family. The most difficult aspect of

living with this disease is the excruciating pain I have

had to endure, and therefore I am looking forward to

returning to a life free of pain where I can enjoy keeping

fit and healthy and return to my weekly cycling

event with my brothers.

. . .continued from ROAD TO REMISSION, page 13

Scott is an Operations/Call Center Manager

who lives and works in West Midlands, United

Kingdom. Scott is happy to raise P/P awareness

by telling his story in the Quarterly. Once he is

feeling better, he hopes to continue to raise

funds for other PV sufferers. If you would like

to support Scott’s treatment fund, please visit

http://www.youcaring.com/medical-fundrais