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SCLERODERMA STRONG

How I Learned to Love

the Tough Skin I'm In

It’s amazing to watch your- pen to me. She said I was
self change, as the years go on. going to be ok. And for a
The outcome of change can few years, I believed
be immensely rewarding that.
when you’re forced to change. The disease has taken
Sometimes in life we’re cata- over my entire body,
pulted into situations that tightening my skin so
break us down, literally, and much, you can't pinch
while picking up the pieces to an inch. My hands have
put ourselves back together, taken the worst beating,
we discover this streaming with my fingers perma-
river of strength that runs nently curled into balled
within us. I was catapulted fists that I cannot open.
into a raging bullpen of an BY JESSICA My caramel skin color is
incurable disease called scle- MASSENGALE now jaded with white
roderma at the young age of splotches everywhere
22. The past 8 years haven't been easy, but and people often think I’ve been burned.
sometimes life breaks us open to the raw Along with all this comes joint pain, skin
bitter core of our soul, to help us realize ulcers and digestive issues. It’s a difficult
the real purpose of living. feat to be stricken with illness at an age
Scleroderma is an autoimmune disease when you’re supposed to be finding your-
where your body produces too much col- self. Twenties are the age to build yourself
lagen. There are 300,000 people in the into who you want to be, and having scle-
United States with scleroderma. It affects roderma has molded me into someone
children and men, but the majority of wise beyond my years.
individuals are women. There are different Scleroderma has presented me with an
forms of the disease and every patient is array of problems that are out of my con-
affected differently. You can have Diffuse trol. As I watched my body change, I need-
Scleroderma, which means your skin will ed an outlet for what was going on. So I
start to feel extremely tight, almost as if created a Facebook page called
you're turning into a statue. Or you can Scleroderma Strong, because I wanted to
have Systemic Sclerosis, which means shine light on such a rare disease. Today,
your heart, lungs, stomach, or kidneys with over 10,000 followers, I want to
become severely compromised. Lung fail- show the world that it’s ok to be different
ure is the leading cause of death. The med- and to not be ashamed of what we’re going
ications that they give to treat it are used through. There is a lesson to be learned
to treat other diseases. There is no specific from every situation we go through in life.
medication designed to halt the progres- You just have to humble yourself to be
sion of scleroderma. open to accepting it.
The first instinct I had when I was diag- Awareness is the key to raising money
nosed was to research it on the Internet. towards research to find a cure, which is
By the time I was done, I was struck with why I attend the “Stepping Out to Cure
a deep terror that shook my bones like Scleroderma Walk”, every year. It’s an
never before. It was like I swallowed a indescribable sensation to be surrounded
seed of every bad feeling on Earth and it by loving friends and family, as we raise
blossomed those feelings into the fiber of funds and walk for a cure. Sometimes I
my soul. What I gathered from my can walk the whole thing, and other times
research was that I have an awful disease I need golf cart assistance to the end. But
that has no cure, the lifespan is about five what matters is that I’m there, along with
years, and I’m going to suffer tremendous- all the others that share the same strife.
ly until I die. I called my cousin hysterical- We won’t give up until a cure is found.
ly crying, and she told me not to worry, To sign up for the Scleroderma 5K Walk,
that none of those things would ever hap- visit www.scleroderma.org.

A Whole New World for Substance Abuse

Service Providers and Marketers

Continued from page 3
draft and publish, by January 1, 2018, proposed rules on minimum licensure standards,
which will include requiring that providers be accredited for each of their licensed serv-
ice components. The Act also permits DCF to make unannounced inspections at any
time and expands DCF’s authority to take action against a licensed substance abuse
service provider for violations on a tier-based system that also includes the imposition
of significant fines.
Treatment providers, recovery residence operators and marketing entities who do
business with them should consult qualified health law counsel to advise and assist
them with compliance with the complex new Practices of Substance Abuse Service
Providers Act, and/or to take advantage of the opportunity to submit comments when
DCF publishes the proposed new licensure standards.

Sandra P. Greenblatt is a Board Certified Health Lawyer and Partner at Lubell Rosen
in the Coral Gables Office and can be reached at (305) 577-9995 and
spg@lubellrosen.com. Cynthia Barnett Hibnick is a healthcare litigator
and Partner at Lubell Rosen in the Coral Gables Office and can be reached at
(305) 671-7771 and cbh@lubellrosen.com.

The above is a summary of the law for information purposes only and is not legal advice.

4 December 2017 southfloridahospitalnews.com South Florida Hospital News