Lymphedema Awareness Part 2

kira66715

From LER&N: personally, in the past, I haven't felt they've advocated for patients, perhaps that's changing, along with the initials. Can only hope..

http://lymphaticnetwork.org/news-events/shedding-light-on-a-lymphedemic-national-lymphedema-awareness-day-march-6-2

Shedding Light on a Lymphedemic, National Lymphedema Awareness Day, March 6, 2014

March 2014 

by William Repicci, LE&RN Executive Director

When I was first introduced to the field of lymphatic disease and
lymphedema, I was most struck by how little I knew about these diseases.
Having worked extensively in the area of congenital defects and
infectious disease, both in the US and Africa, how was it that a disease
that affected some 10 million Americans and hundreds of millions
worldwide remained shrouded in such silence? As I learned that more
people in the US suffer from lymphedema than multiple sclerosis, AIDS,
muscular dystrophy and Parkinson’s disease combined, my confusion only
grew. Most people I knew were intimately aware of these other diseases.
Yet, mention lymphedema and I routinely got blank stares. Two such
moments cemented my resolve that a change was in order. In the first, a
University Dean, having never heard of lymphedema, asked me to explain
it. When I did, she exclaimed, “My mother has that! She had breast
cancer and her arm is now severely swollen. Tell me the name again?” The
second incident was talking to a doctor and his wife. After describing
lymphedema, she raised her leg and said, “I have that. My doctor said it
was drainage issues. What did you call it?”

If patients aren’t aware of the name of their disease, they are robbed
of the support that comes from knowing they are not alone. By not
feeling connected to a larger group, the power of numbers to create
awareness fails to find a voice and the potentially powerful advocacy of
family and friends is muted.

Adding to the dilemma is a medical profession that has too often
instilled in patients the idea that there are worse things than
lymphedema, and that suffering quietly is a noble approach. Yet, when I
talk to cancer survivors with lymphedema, they are most likely to say,
“My lymphedema is worse than my cancer. They cured my cancer. Lymphedema
is forever.”

Suffering in silence results in only one thing—society’s collective
yawn. Let others decide the pecking order of what is most important.
Change comes when we demand it. Change comes when people don’t take “No”
for an answer. Change comes when groups coalesce around a compelling
cause and systematically advance their agenda in every forum imaginable.

Whereas there are pioneer groups changing this, such as National
Lymphedema Network, Lymphedema Treatment Act, and LE&RN to name just
a few, it remains a challenge to make headway if the patient population
doesn’t self-identify with their disease or promote dialogue on the
subject. We need a national education campaign that addresses the impact
of lymphatic disease and lymphedema. We need substantial increases in
funding for research. We need a notable spokesperson to come forward and
advocate for awareness and funding. We need our politicians to become
champions in this cause.

March 6th is National Lymphedema Awareness Day. In support of patients
and LE&RN, the New York State legislature will read a resolution on
both chamber floors acknowledging this day. In addition, they will read a
resolution honoring LE&RN’s youth ambassador, seven-year old Connor
Looby. The legislature will also be voting on a funding request for
LE&RN’s National Patient Registry and Tissue Bank. We can also
announce that LE&RN is soon to receive a $500,000 bequest from a
woman honoring a brother who suffered from lymphedema throughout his
life. These funds will be used for fellowships in lymphedema research.
Progress is being made.

When we changed our name to Lymphatic Education & Research
Network—LE&RN, it was a statement that we had redoubled our efforts
to spearhead education and advocacy as well as research. As such, we
will continue to expand our free live-stream symposium series featuring
the world’s leading researchers and medical practitioners. We will
continue to expand our new website with user friendly features such an
“Ask the Expert” forum. We will continue to grow our social media,
bringing you the daily highlights in the field and at LE&RN. We will
use all of our human resources to advocate for the Lymphedema Treatment
Act and an increase in research funding—federal, corporate, and
private. Finally, we prepare to award new research fellowships this
summer, guaranteeing that the best and brightest are welcomed into this
field.

With funding always an issue, many of our goals remain elusive; e.g., a
national hotline, lymphatic disease curriculum in medical schools, a
national lymphedema education campaign, state chapters, and outreach to
expand our patient registry and tissue bank. Instead, we hear how
federal funding of lymphatic disease and lymphedema research is
diminishing at such an alarming rate that we are in danger of losing a
new generation of researchers. There is only one road to success:
fearless determination by those who stand the most to gain. As we
approach National Lymphedema Awareness Day, we at LE&RN call upon
all those with lymphatic disease and lymphedema and all those who
champion their cause to make their voices heard.

**

William Repicci is Executive Director of the Lymphatic Education & Research Network (LE&RN).