Category Archives: Blog

IPPF Awarded Abbey S. Meyer Leadership Award by NORD

Washington, D.C. – IPPF, International Pemphigus & Pemphigoid Foundation, was honored today at the Portraits of Courage gala event as the recipient of the prestigious Abbey S. Meyer Leadership Award by NORD (National Organization for Rare Disorders).

NORD hosts the Portraits of Courage Gala annually to bring together the rare disease community and to honor and celebrate the year’s outstanding achievements.  During the event, they recognize the individuals, organizations, advocates and companies that are moving the community forward in the fight against rare diseases.

The award was presented to the IPPF for the organization’s outstanding advocacy achievements on behalf of patients with rare diseases. The award, named for NORD’s founding president, is presented each year to a NORD Member Organization for demonstrating outstanding leadership and representation of its members.

We are proud to work with NORD and other member organizations to provide a voice for those living with rare diseases. Each year, NORD, a nonprofit organization that represents the 30 million Americans with rare diseases, hosts the Portraits of Courage celebration, to celebrate the pioneering achievements of individuals and organizations.

The IPPF is the pre-eminent global organization dedicated to improving the quality of life of all people diagnosed with, or affected by, pemphigus or pemphigoid.

Please call Congress TODAY and ask them to include the OPEN ACT, HR 971 (Orphan Product Extensions Now, Accelerating Cures & Treatments) in the 21st Century Cures Legislation. The OPEN ACT has the potential to double the number of approved rare disease treatments available to patients. To date, 155 patient organizations support the OPEN ACT, including NORD, Global Genes, and the Genetic Alliance. By standing together we can ensure Congress helps rare disease patients.

Click here to take action: Stand up for Rare Disease Patients TODAY

Please share this alert widely and join this event on Facebook.

Why the OPEN ACT is important: Despite advances made possible by the Orphan Drug Act, 95 percent of the 7,000 rare diseases still have no approved treatments. Biopharmaceutical companies are not repurposing major market therapies to treat rare diseases because there is no incentive for them to do so.

The OPEN ACT is bipartisan legislation that creates an economic incentive for companies to repurpose drugs for rare diseases. The OPEN ACT could:
·         Bring hundreds of treatments to rare disease patients
·         Enable access to safe, effective and affordable treatments
·         Spur biotech investment, innovation, and foster clinical research at universities while creating new jobs

Learn more at: http://curetheprocess.org/ incentivize/

 

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

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

 

a time . . . what else could I do?

In December one of the doctors

noted that along with the

predominantly oral presentation,

I had some skin symptoms, but it

wasn’t until July 2011 as a result of

my skin condition worsening with

blisters on my scalp and face that

I was referred to a dermatologist.

In September 2011, as my dermatologist

had suspected, my

PV diagnosis was confirmed and

refined as pemphigus with predominant

mucous membrane

involvement. Unfortunately, my

dermatologist moved to another

country and I was referred to a

new dermatologist. I was now being

seen by both an oral consultant

and a dermatologist. I continued

a variety of different treatments

(Dermovate, Protopic ointment,

Elidel, Betnesol nasal spray, and

prednisolone mouth wash) and

drugs (prednisolone, azathioprine,

mycophenolate). None of them

were particularly effective.

During this time, the erosions

had spread all over my face and

nose and were particularly severe

on the top of my head. I was then,

and I still am, obese due to the

large amount of steroids. The disease

is extremely painful; so much

so it affected my sleep because I

cannot rest my head on the pillow

at night. I remember visiting

the hospital one day, when my lesions

were particularly bad and the

nurse thought I had been in a car

crash!

Every time I washed my hair

or face I would lose a piece of

skin. Every time I ate anything my

mouth would start to bleed. I can

honestly say at this point I was a

broken man with little quality of

life. I would hide the pain and discomfort

from my family. Many

times I said I was okay, but inside I

felt so depressed and despondent:

there did not seem to be any light

at the end of the tunnel. It felt like

no one could help me and there

was nowhere to go.

In an attempt to seek help and

get yet another opinion, my dermatologist

arranged for me to

see a world expert in dermatology

at Guys Hospital who determined

that my high daily steroid

requirement could not continue.

He recommended a drug called

rituximab and initiated a request

for funding via National Health

Service (NHS) of England. Unfortunately,

the funding request was

declined. I was devastated.

My wife wrote to our local member

of Parliament hoping his support

would sway NHS to reconsider

their decision, but it didn’t. My

wife and family decided that we

had no alternative but to try and

raise the money ourselves, and as

a family we began our mission.

In preparation to receive rituximab,

I was advised to start weaning

off the drugs I had taken for so

long. This had disastrous consequences

and led to a massive flare

up — the worst I have ever had. I

had to be taken into hospital as an

emergency case, where for over

four days I received three pulsed

doses of IV methylprednisoloine

and IVIG infusions.

This made an enormous improvement

to my pemphigus and

for the first time in years I felt so

happy and such a sense of relief as

the pain had largely subsided.

I was aware IVIG is meant to be

an interim treatment and a temporary

solution. Generally patients

remain lesion-free for up to 30

days. In my case only two weeks

passed. I continued to receive IVIG

every two to four weeks, and it

seemed to stop disease progression.

Because I had to be hospitalized,

my consultant submitted

additional clinical information to

the NHS explaining my new circumstances.

Sadly, this renewed

request for funding of rituximab

was declined again.

One of my family’s first fundraising

events was a 100-mile

bicycle ride. I am so proud of my

son, brothers, and friends who

took part. Everyone who donated

 

tween the winter holidays and early January is the

most busy time of the year for mental health professionals,

in part because it is difficult during these

times of reflection not to become depressed, if that

is a struggle.

It is important for those who are affected in this way

to make a special effort to practice positive thinking

(mindfulness) and reflect not only on the unpleasant,

but also pleasant memories. I’ve suggested imagining

that you’re putting negatives into a box and taping it

up; then seeing yourself locking that box into a trunk;

then imagining wrapping chains around the trunk

and leaving it for a later date. You will know where the

trunk is and how to retrieve what is inside, but you

can also choose to keep all or most of the contents

locked up for a while. At this point you may be willing

to accept offers of help from others, which is among

the healthiest of escapes.

The holidays are also a good time to reach out to

others. We’ve all heard that it is truly more satisfying

to give than to receive. Inviting lonely people to an

event or volunteering at a nursing home or other facility,

for instance, will have a positive effect on your

mood. As a way to track your progress through the

difficult holiday period, keep a record of your mood

and activities or lack of activities. As regularly as you

can, rate your mood on a 1-to-10 scale with 1 being

the worst and 10 being the best. Also track your activities

or lack of them as a record of the patterns and

both positive and negative triggers. Everyone is different,

and how you are in this world and during this

time of year will not be the same as for others. Hold

onto necessary traditions, but allow yourself to have

new experiences. You may surprise yourself.

Besides these mindfulness approaches and techniques

related to reaching out to others, there are

a number of physical solutions that may help with

dealing with SADS. Vitamin D supplementation has

been found to be useful. As well, daylight spectrum

lamps (or just special bulbs put into existing lamps)

can also help counteract the seasonal lack of natural

sunlight. Still, many people will need different medications

or increased doses of their current medications.

Checking with your primary care physician or

having an evaluation by a psychiatrist or psychologist

can be helpful and may greatly increase the quality of

your holiday season.

After eight months of oral symptoms and appointments

with doctors and dental specialists, I received

my own PV diagnosis right before Thanksgiving. One

of the first posts I read on the P/P online discussion

group forum was from someone (Hi, Skip!) who recounted

feeling lucky to swallow mashed potatoes in

his first symptom-filled year. That really helped me

to put things in perspective.

I focused on what I could do, not what I could not

do. Unless you’re having a flare or going through a

particularly rough time physically, get out and do

things. Happiness is a choice, and all humans have

the ability to be happy.

Happy holidays and my best wishes for a terrific

new year.