Author Archives: Noelle Madsen

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.

December marks the official calendar start of
Winter. The good news: holidays, parties, special
foods, festivities, time to be with family and
friends.
The bad news for much for the Northern hemisphere:
snowy, cold, and blustery weather, the
shortest days of the year, time for reflection on
people we’ve loved and lost, year-end promises
made and broken. Sadly, holidays can be difficult
for many people and can get the best of even a
healthy person.Seasonal Affective Disorder, also known as
SADS, is a potentially debilitating condition that
is characterized by depressed mood, particularly
among people who live in areas that do not have
sufficient sunshine or warm weather. While the
symptoms usually improve as the season changes
and the days and hours of sunshine get longer,
for the many who experience it, it is a very difficult
time of year.
I am starting to write this article in October (in
Pittsburgh, PA), and the shorter days are already
affecting many people. Once Daylight Savings
Time goes back to Standard Time, it will be dark
by 5:00 p.m. in many regions, meaning many
people will go to work in the dark and return
home in the dark. Others will go to bed late and
sleep well into the day, allowing only a few hours
of natural sunlight on a good day!
Years ago it became clear in my own psychology
practice many patients became more depressed
during winter months to the degree they
temporarily required larger doses of antidepressant
medications. Others were able to “function”
but felt more sad, moody, or agitated, had less
energy, and had more difficulty with everyday
tasks.
Some people are so sad, irritated, and moody
that they deliberately isolate themselves during
the holidays and refuse invitations. This is probably
the single most detrimental thing you can
do. The holidays are not a time to be alone and
looking into yourself. It is important to hold onto
doable traditions.
I normally ask patients to over-plan their time
during the holidays, thereby leaving less idle time
to feel more upset or depressed. The period be-
The average pemphigus or
pemphigoid patient sees five
doctors over 10 months to obtain
a correct diagnosis. The
IPPF Awareness Campaign
strives to change this statistic
by reducing the amount of time
it takes a patient to receive a
pemphigus vulgaris (PV) or mucous
membrane pemphigoid
(MMP) diagnosis.
One way we do this is by
sharing your stories. The following
three stories highlight this
important mission by sharing
tales of awareness from a patient,
a student, and a dentist .
International Ambassador
The IPPF recently launched
its Awareness Ambassador
Program with 11 participants
attending the first Ambassador
Orientation. Carlos Andres
Campo filled out his paperwork
right away and became
the IPPF’s first Awareness Ambassador.
Carlos is also our first
international Ambassador, volunteering
all the way from Bogotá,
Colombia.
Diagnosed with PV 10 years
ago, Carlos understands the
struggle patients go through to
obtain a diagnosis. He saw five
doctors and two dentists over a
period of six months before he
was diagnosed. Carlos recognizes
the need for awareness and
is eager to contribute in whatever
ways he can. “I hope to bring
a message of hope by teaching
and training people how to
deal with this disease through
the experiences I have lived,”
he said. “I felt the need to be a
connector between the United
States and Colombia, as well as
South America, if possible.”In addition, Carlos will use
his language skills to translate
awareness materials into Spanish
and Portuguese, providing
a valuable resource to P/P patients
around the world. “If a
patient can be diagnosed at an
early stage of the illness, they
could have a better quality of
life,” he added.
Intern Educates Campus
Rendell “Dell” Doctor has
been interning with the IPPF for
several months, working closely
on the Awareness Ambassador
Program. One day Dell
informed us of an on-campus
health fair at his college, Sacramento
State. He immediately
recognized the opportunity
for awareness and proceeded
to gather brochures and pamphlets
and put together a trifold
poster on P/P.
“I may not have any connection
with PV or MMP,” said Dell. “I
don’t have any of these diseases
or know anyone who does, but I
definitely agree with the strong
need for raising awareness, especially
on such rare diseases.
The IPPF has taken a chance
on me by allowing me to intern
with them. I want to show that I
can be as passionate about the
effort as the people I work with.”
Dell also partnered with the
pre-dental society and his prehealth
professional fraternity,
Delta Epsilon Mu, to showcase
this information and get the
word out. Several students and
staff members visited his booth
to ask questions, and a few even
expressed interest in volunteering
for the Awareness Campaign.

“These people, like me, had
no prior knowledge of PV or
MMP before learning of the
IPPF,” Dell said. “It’s really great

On September 9, 2014, members of the IPPF traveled to Capitol Hill in Washington D.C. to talk to their local congress members about legislation affecting the pemphigus and pemphigoid community.

Senior Peer Health Coach Marc Yale, and Patient Services Coordinator Noelle Madsen spoke with six California members of the House of Representatives, and Senators Barbara Boxer and Diane Feinstein.  Marc and Noelle sought support for the Medicare Advantage Participant Bill of Rights of 2014 (H.R. 4998/S. 2552).

Medicare Advantage Plans are removing dermatologists (and other specialty physicians) from their networks. This gives insurance companies to ability to eliminate doctors who prescribe vital, but expensive treatments to pemphigus and pemphigoid patients.  As a patient or caregiver, you already know how difficult it can be to find a doctor that can treat P/P.  Imagine having that physician removed from your insurance. This would be extremely harmful to a patient’s current quality of care.

Marc and Noelle also discussed the Patients Access to Treatments Act of 2013 (H.R. 460).  This bill would increase National Institutes of Health (NIH) funding by $1.3 billion.  The more funding the NIH gets, the more research can be done for rare diseases like pemphigus and pemphigoid.  This bill would also prevent insurance companies from increasing “tier four” treatment costs.  Many pemphigus and pemphigoid treatments are considered tier four, and increased costs to these treatments could negatively affect quality of care.

The IPPF feels these pieces of legislation are extremely important to the pemphigus and pemphigoid community. We urge you to contact your representatives and senators to ask for their support of these bills.

If you have questions about these, or other legislative affairs, please contact the IPPF at advocacy@pemphigus.org, or call Noelle Madsen at 855-4PEMPHIGUS extension 105.

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In February of 1995 I noticed some eruptions on my chest which I ignored. The week after I notice them, I went to a week-long school for the Air National Guard in Virginia. While at the school, the eruptions increased on my chest, as well as in my nose, mouth, and face. I was extremely frightened; I did not know what was happening to me. I thought of going to “Sick Call” but decided not to, since the school was only for one week and I wanted to finish it. When I flew home from attending the school, my family took a look at me and begged me to go to an Emergency Room immediately. Since I was very tired from the trip, I waited until the next day.

The next day I went to the Emergency Room of one of the local hospitals. The physician in the ER admitted that he really did not know what was wrong with me. My wife suggested that he call a dermatologist at a bigger hospital which he did. The dermatologist made an appointment for me for the following Monday.

On that Monday I went to the dermatologist who diagnosed me with a disease that I never had heard of–pemphigus. He told me it was a very serious disease, one that was rare and very expensive to treat. I did not know where to turn. I did not know of anyone who had this disease or of any organization who dealt with this malady. He prescribed a mild dose of steroids and sent me home. The eruptions on my skin (which I learned were called “lesions”) increased. Despite many visits to the dermatologist and increases in the medication, the condition worsened. The dermatologist that I was going to suggested that I go to either New York City or Boston for treatment since the doctors in those cities had more experience in treating this strange disease. I opted for New York City.

After visiting a dermatologist in New York City, I was admitted to New York University Medical Center for treatment in April of 1995. The dermatologist in New York City was very aggressive in treating my disease with high doses of steroids, along with other medications and blood treatments. After a week of the aggressive treatment, the spreading of my pemphigus condition stopped. After three weeks I was sent home to recover.

Slowly I was weaned off of my medications in order to determine what my “maintenance level” was. By May of 1996 I was completely off all medications and have not seen a reocrurrence of pemphigus.

Carolyn Blain
PEM Friends Administrator

 

 

 

On Saturday, October 6, 2012, the Los Angeles Support Group held their annual gathering. We met at the Santa Monica Library and 22 people attended. Some had to drive almost two hours to attend, but all agree it was well worth it!
Attendees got to meet Lee Heins, Sonia Tramel, and Greg Wright from our Board of Directors, Senior Peer Health Coach Marc Yale, and ask guest speaker Dr. Vanessa Holland from the UCLA Dermatology Department disease and treatment questions. Dr. Holland said she looks forward to speaking at future meetings as well.
Lots of questions were asked and many focused on rituximab (Rituxan®) treatments and the use of CellCept® and IVIg. It was a terrific meeting because so many issues were covered. Everyone who joined us left feeling more informed and increasingly hopeful.
Prior to the start of the meeting, refreshments were provided by 2012 Annual Meeting Platinum Sponsor KabaFusion — delicious breakfast sweets and coffee! Joining the LASG was Nate Hughes, a representative from KabaFusion. Nate gladly handed out information and answered questions.
After the meeting, many us went to Panera Bread for lunch. Thanks to Marc, Panera Bread generously donated a percentage of each person’s bill back to the IPPF.
If you are interested in more information about the Los Angeles Support Group, please email
usa.ca.losangeles@pemphigus.org.