by
I’ve
been mulling over what to write for my initial post for Multiple Sclerosis News Today.
I want to make a splash, to keep you interested and let you know who I am and
why I’m here. As Rogers and Hammerstein wrote in The Sound of Music, let’s start at the very
beginning.
I was
diagnosed with relapsing-remitting multiple sclerosis in 1986. I call that
period of the disease “The Dark Ages.” There were no approved medications, the
internet was in its infancy, and most medical professionals turned a deaf ear
to discussions about alternative therapies.
After
my diagnosis my doctor told me to go home, rest and call him for a prescription
of steroids if I had any symptoms.
That
was then. This is now.
Today
there are more than a dozen approved medications for MS, with more in the
pipeline. Pharmaceutical companies are clamoring to discover new and better MS
drugs. And when drug patents near their expiration dates, researchers scramble
to get FDA approval for effective and less-expensive equivalents.
Competition
in the marketplace benefits us.
We also
have a lightning-fast means of finding credible information to answer some of
our questions. There’s a deluge of reliable websites on the internet.
Unfortunately there also are scams and get-rich-quick schemes begging for our
attention. Those sites realize our need for a better quality of life so they
offer empty promises of instant wellness or cures. Placing your trust in them
can carry dangerous and expensive consequences.
That is
why I chose to become certified in patient advocacy. Marrying my new degree
with my work as a freelance writer helped me find a way to help others find the
information they need. I wanted to help others manage their disease in a way
that’s valuable, honest and compassionate. That is my mission in life, with
every fiber of my being.
When I
was diagnosed I was treated with kindness and compassion. My nurse practitioner
taught me that, despite my diagnosis, I’d always matter and add special value
to the world. That’s why I’m paying it forward, to teach others the same
important, life-changing lessons I learned long ago.
It’s
what empowers me.
This is
a busy time in the world of MS, one with new treatments, research, MS
organizations, websites, legislation, articles, books, blogs, patient-centered
forums — the list goes on. This growing amount of information can contribute to
feelings of confusion or helplessness for many patients.
With an
ever-increasing number of patients being diagnosed each year, that means my job
grows exponentially.
Thirty
years ago there wasn’t much to report except the promise of a disease-modifying
medication. Today the challenge is to keep up with what’s new. It’s certainly a
welcome challenge. We have more and more choices and options in MS care, and
that is a dream come true.
So,
here I am, a writer and patient advocate who is excited to write for Multiple Sclerosis News Today.
I’ve been an admirer of theirs for a while, and now I’m proud to be a
contributor. I look forward to engaging with you as I share what I hope will be
valuable, honest and compassionate reporting for everyone. You all matter and
you add great value to the world.
Never
give up!
