A Message from Karen
In 2005 I
met Karen (Strutynski) and her husband Allan at my job (at that time) as a
Leasing Agent for the apartments where I also lived. The Strutynski’s were
leasing an apartment for Karen’s daughter Tanya, and from that first meeting I
learned that Tanya had Acromegaly…a term which I was unfamiliar with but I
knew the term Gigantism. When Tanya came in to sign leasing papers, I
of course noted her size immediately. But from the moment we began talking,
Tanya’s size vanished from my mind as her sparkling personality, smile and laugh
grabbed my heart. I had no true understanding of Acromegaly at that time and it
didn’t even cross my mind that Tanya was still growing and faced a multitude of
new health issues and pain. Tanya moved into a building near mine and I assured
Karen and Allan that I would keep an eye out for Tanya, which I hoped would give
them some peace of mind. I learned after checking in on Tanya now and again that
she was suffering some agonizing and excruciating migraines…and her recent back
surgery was of course, another source of pain. A month later I quit my job and
moved away. After that, Karen and I emailed now and then but by the time I moved
to another state in 2007 we’d lost touch.
In May of 2010 I was channel surfing before bed and saw what I immediately
recognized as Tanya’s face on TV! I turned up the volume and caught the last 20
minutes of TLC’s (The Learning Channel)
“Help! I’m Turning Into a Giant”. I was stunned, as the Tanya I knew was now wearing hearing aids and slurring her words a
bit. I learned in that last 20 minutes of programming that Tanya had suffered a stroke as well
as numerable other health issues including more brain and back
surgeries. And when I learned from that airing that Tanya was the only known
Acromegaly patient in the World who was not able to be treated successfully by
medicines or surgeries (due to the location of her main and satellite tumors),
my heart sank. I had to do something to help.
I contacted Karen the following day and reminded her of who I was. I told her
that I wanted to help by building and maintaining a website for Tanya. Karen was
very thankful and we proceeded. I asked a lot of questions about Tanya and
learned about all the pain and surgeries that the last 5 years had brought on. I
was stunned to find out that Tanya's meds come to $40,000.00 a month! I
wanted the website to be a safe place for Tanya to tell her story as well as
appealing to her likes…I found out that Tanya’s likes “Bling” (jewelry) and
pretty things, as do most women. So was born the website’s look of Pink Flowers,
Gold Ribbon, White Satin and Pearly Tiara’s (Tiara’s? Yes! Princess is Tanya’s
In my past weeks of researching Acromegaly, I’ve come across many
a wonderful Acromegalic sharing their blogs on the Internet. I’ve also learned that
five persons will develop or harbor a pituitary tumor…that’s right, 1in 5!
So, what if you woke up one morning and noticed that the look of your face or
hands or feet was changing? What if day after day these changes became more
pronounced? What if you learned that you had a pituitary tumor that was
impossible to completely remove? Most people will never have to know the answers
to those questions, but Tanya Angus does. And after all the emotional and
physical pain that Tanya endures on a regular basis she still finds a way to be
“Tanya the Acromegaly Activist”…bringing her story to the media in hopes of
preventing her diagnosis from becoming someone else’s diagnosis.
In closing, I ask that you take some time and learn about Acromegaly and Pituitary
Disorders and share our website and the links contained in it with your family
and friends. These conditions can strike anyone, at any age! We need you to help Tanya Angus in helping others.
by Tina Valle
A Message from Karen...
“I just have to tell you all something that you might already know from
one of the News3 media clips…I have this 'thing' about angels.
When we met Tina 5-6 years ago, it was truly a blessing. Tanya and I were
talking recently about how Tina would kind of take Tanya under her wing. I
so appreciated it, because it was important for Tanya to keep her
independence as her disease progressed.
As Tina is in our life now, we prepare for another brain surgery. With
Tanya’s health fluctuating, Tina plays an important role and is considered
by us to be Family (she’ll soon be Tanya’s God-Mother). She cares for
Tanya’s well-being by doing what she does with the website (such as
screening email content, designing/maintaining and ever updating the
website and blog); as well as contacting people and helping us sort out
what needs to be done.
All of this helps me to be able to spend more time with my girls and gives
me more time to work with the doctors regarding my daughter’s health
issues. We could not survive without all the help Tina is assisting us
with. Tina is an angel to our family.
Love and Blessings,
July 01, 2010
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